Diabetes Research Network Update The Diabetes Research Network is part of the National Institute for Health Research Autumn 2008 CARE DIAGNOSIS PREVENTION TRE by hyw14090

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									Diabetes Research
Network Update
The Diabetes Research Network is part of the National Institute for Health Research

Autumn 2008                           CARE    DIAGNOSIS     PREVENTION     TREATMENT




In this Issue
Updates
Coordinating centre          02
update
Events update                02
Local research          03 – 05
network update
Devolved nations’       06 – 07
update
Portfolio update             07
Patient advocate        08 – 09
update
Noticeboard                  09
Training and                 10
education update
Website update               10


Information
Want to get involved?        10
Who’s who at the             11
coordinating centre
Contact details              12




                                      DIABETES RESEARCH NETWORK UPDATE                 01
Coordinating Centre                    A New DVD and                                                                      Local Research Network Update                                                   North-East London
The Coordinating Centre is             Website launched                                                                                                                                                   The North East London DRN has
delighted to welcome two new           In May, a new DVD and website                                                      Eastern England                        North East & Cumbria                     been involved in a series of local
members of staff: Michael Igiebor,     resource was launched by the DRN                                                                                                                                   events during the summer,
as Information Systems Support                                                                                            The Eastern DRN is committed to        We would like to welcome Pat             organising stalls to enhance
                                       at a House of Commons reception
Officer, will be working with the IS                                                                                      continuing and developing further      Lowther and Lorna Ingoe, our new         awareness of diabetes, its prevention
                                       on International Clinical Trials Day.
Manager and his role will include                                                                                         engagement with the public. We         CTO/Senior Research Nurses and Val       and a healthy lifestyle. The first was
                                       The DVD aims to encourage patients
looking after the DRN website and                                                                                         have been working hard to              Corrall, our new network                 in June, a self-management course
                                       to get involved in diabetes research
assisting with portal development;                                                                                        encourage researchers to seek          administrator. And congratulations       certification ceremony at the Brady
                                       and focuses on showing patients’
and Katherine Collum, as Team                                                                                             feedback and input from reference      to Anna (Network Manager) and Jon        Centre, hosted by Social Action for
                                       perspectives of what it is really like
Administrator, will support research                                                                                      panels such as the DRN UK and          Lartey on the safe arrival of Erin, a    Health. The ceremony was attended
                                       to be involved in a clinical trial.
coordinators Louise Forster and                                                                                           local groups e.g. PPIRes.              healthy baby girl! Anna will return to   by 128 people, most of Bengali
Suki Balendra.                                                                                                                                                   work in 2009. At the same time, we       origin. The NELDRN stand was
                                       Mr Pravin Chotai, one of the             Pravin Chotai, Helen Southworth MP and    Volunteers on the Fenland Study        are sorry to say goodbye to Manju        visited by 54 people, and 49 of
                                       diabetes patients who features in the    David Matthews at the DVD and website
In October, the Coordinating Centre                                                                                       are provided with individual           Agarwal, our Data manager, who has       these had an assessment, including
                                       DVD, felt it was important to be part    parliamentary launch in May
is delighted to welcome back                                                                                              feedback forms after their visits      left for pastures new – we wish          anthropometric measurements such
                                       of this initiative. “Being involved in
Assistant Director Joanne Holloway                                                                                        and also receive regular updates in    Manju every success, but she will be     as height, weight, waist
                                       research was a great experience for      getting involved is so important. The
from maternity leave. Thanks go to                                                                                        newsletters. Representatives from      a great loss to the team.                circumference, blood pressure and
                                       me,” he said. “So I was delighted        DVD is an important part of this work.’
Rosemary Sowden who was Acting                                                                                            the Fenland study attended the                                                  capillary blood glucose.
                                       to be involved in this project,
Assistant Director during this                                                                                            Patient and Public Involvement in      CHeartED Study
                                       helping to explain to other patients     Professor Sally Davies, Director
period. Rosemary returns to her                                                                                           Research Open Evening at               Congenital malformations occur more
                                       what it is all about. I would            General of Research and
previous post, as Manager of the                                                                                          Addenbrooke’s to reflect on their      frequently in the offspring of women



................
                                       definitely recommend anyone to           Development, Department of Health,
South West & Peninsula Diabetes                                                                                           volunteers’ contribution to research   with diabetes. Whilst the
                                       consider being involved in research      and Director of the National Institute
Local Research Network.                                                                                                   findings. Feedback from volunteers     malformation incidence can be
                                       and I am sure this DVD will provide      for Health Research said: “The
                                                                                                                          is also obtained through a             reduced by improved diabetic control
                                       people with a much better idea of        NIHR Diabetes Research Network
                                                                                                                          freephone telephone line,              it is possible that some women/
                                       what to expect.”                         was established because of the
                                                                                                                          internet/email and evaluation          pregnancies are more susceptible
                                                                                immediate and growing importance
Address update                                                                                                            questionnaire/participant              than others. Professors Mark Walker
                                       Professor David Matthews, a director     of the disease to public health in the
                                                                                                                          information sheets.                    and Judith Goodship have obtained
The ADDRESS project, which aims        of the DRN, played a key role in         UK. The Network provides a unique                                                                                         North East London DRN staff performing
                                                                                                                                                                 EU funding to address this question.
to identify adults and children over   developing the resource and stated:      opportunity for more people to take                                                                                       blood pressure and blood glucose checks
                                                                                                                          Features in the BBC, local
5 years of age who have recently       “We really need to be encouraging        part in this important area of                                                                                            at the Chigwell Show (Aug 2008).
                                                                                                                          newspapers, websites and various       The CHeartED application was made
been diagnosed with type 1             many more of those with diabetes to      research and this new DVD and
                                                                                                                          newsletters have given the study a     in response to a call on gene-
diabetes so that they can be           become involved in research. We          information pack will be invaluable
                                                                                                                          high level of coverage and this have   environment interaction and              The second was at the Montefiore
offered the chance to participate in   cannot advance the treatment unless      in helping people understand what a
                                                                                                                          encouraged greater response from       cardiovascular malformation but we       Sure Start Children’s Centre Family
studies, is now up and running.        we know how well therapies work          good experience it is to be involved
                                                                                                                          the public. Recent press coverage      would like to extend this to all         Fun Day in Tower Hamlets. More
                                       and that means that we need to           in a clinical trial.”
                                                                                                                          included the recruitment of our        malformations associated with            than 200 people attended, and 28
All DRN regions are taking part in     capture the enthusiasm of patients.
                                                                                                                          3000th volunteer.                      maternal diabetes. The study has         of the 70 people who visited the
this project, across 65 sites in the   Taking part in trials is interesting,    For more information about taking
                                                                                                                                                                 been adopted by the DRN (DRN175)         stall had assessments. Most were of
eight regions. To date, 106 people     often enjoyable and certainly            part in clinical trials, visit the
                                                                                                                          We want to develop and expand the      and recruitment is being piloted with    Bengali or Somali origin, and two
have been identified as being newly    altruistic. We have, in Oxford, set up   dedicated website:
                                                                                                                          involvement of the public across       the assistance of the NEC DLRN.          bilingual health advocates attended
diagnosed and have consented to        an active advocacy team that shows
                                                                                                                          our local portfolio studies. The       Following this, we hope to roll the      to assist with the consultations.
be contacted about future studies.     how to get involved – and why            www.diabetesresearchnetworking.org        Eastern DRN is facilitating PPI        study out across the DRN.
                                                                                                                          activities and we are providing the                                             In August, the NELDRN hosted a
                                                                                                                          resources and information to the       If you would like to know more           stall at the Chigwell Show, offering
                                                                                                                          network to encourage people with       please contact:                          blood pressure and glucose checks.
     Events and Conferences                                                                                               diabetes and their carers to get       Judith Goodship MD FRCP                  Over the two days, 200 people had
                                                                                                                          involved. The collation of responses   Professor of Medical Genetics            blood pressure tests and 228 had
     The DRN will be exhibiting at a series of conferences over the coming months, including:                             is helping to shape research           Institute of Human Genetics              capillary blood glucose assessments.
                                                                                                                          design, practice and future            International Centre for Life
     • Diabetes UK Volunteering 2008 Conference in Leeds on 18th and 19th October 2008
                                                                                                                          research studies.                      Central Parkway
     • INVOLVE’s 6th National Conference in Nottingham on 11th and 12th November 2008                                                                            Newcastle upon Tyne NE1 3BZ

     • Primary Care Diabetes Society Conference in Birmingham on 21st and 22nd November 2008.
                                                                                                                                                                                                             continued overleaf



02                                     DIABETES RESEARCH NETWORK UPDATE                                                                                          DIABETES RESEARCH NETWORK UPDATE                                              03
                                                                                                                                                                      Our thanks go to those people who
Local Research Network Update (continued...)                                                                                 lifestyle and education interventions,
                                                                                                                             and the identification and               are participating in the numerous
                                                                                                                                                                                                               recruit local participants, including
                                                                                                                                                                                                               one comparing two routinely used
                                                                                                                             management of pre-diabetes. Of           research studies that are running in     insulins in people over seventy, and
North West                                                                         We want to involve as many people         particular importance to the DRN is      the Peninsula. And our thanks also       another that is examining the efficacy
                                                                                   as possible so we have developed a        the recent success of the                go to those people in Exeter who         of a treatment for chronic foot ulcers.
The North West DRN has research
                                                                                   number of ways to access our PPI          Leicestershire, Northamptonshire &       volunteered to help with the collation
sites in Salford, Manchester,
                                                                                   activities. All tasks will be available   Rutland Collaboration for Leadership     of research inserts and retinal          An Open Evening to provide
Liverpool, and Lancashire. The past
                                                                                   through our web-based portal. We will     in Applied Health Research and Care      screening information booklets. As       members of the public with
year has seen a number of
                                                                                   also be using telephone and post, as      (LNR-CLAHRC), which was one of           studies progress, further volunteering   information on how they can get
developments aimed at improving
                                                                                   well as workshops and meetings, to        only seven successful bids across the    opportunities may arise in Exeter,       involved with the Thames Valley DRN
our user involvement. Local leaflets
                                                                                   ensure that people without internet       country. Each CLAHRC group will          Truro, Torbay and Plymouth.              took place in October. The event,
have been produced that tell people
                                                                                   access can get involved.                  receive up to £10million over five                                                held at the Weston Manor Hotel, was
with diabetes about how they can
become involved in research, and         Staff, patients and the public at the                                               years, which will be used to improve     DRN studies currently taking place in    very well attended and a large
these are sent out as part of the        recent Diabetes Research Open Day in      We hope that all of the tasks will        patient care by putting into practice                                             number of people expressed an
                                         Liverpool (Sept 2008).
                                                                                                                                                                      the region include ASCEND (A study
diabetic retinal screening                                                         help the network to establish PPI in      high quality applied research. This                                               interest in becoming involved in local
                                                                                                                                                                      of cardiovascular events in diabetes,
programme. A radio advert has also                                                 NWL and show the real benefits of         gives us the opportunity to undertake                                             projects. The TVDRN is looking
                                         attended to see how he can better                                                                                            with aspirin versus a placebo), the
been used for a specific study to                                                  involving people in the research          3-4 large studies, engaging                                                       forward to working with these people
                                         control his diabetes and was happy                                                                                           3L study (researching the
enable people who had not                                                          process. Just as importantly, we          researchers across the area and                                                   in the future. For further information
                                         to help with research. He said: "My                                                                                          effectiveness of Levemir in Later
previously taken part to hear about                                                think that these tasks will give          giving us access to a wealth of                                                   on getting involved, see:
                                         diabetes varies from day-to-day                                                                                              Life), and OCT (the macular
our work.                                                                          people the chance to learn more           knowledge and expertise.
                                         regardless of the precautions I take.                                                                                        thickness and metabolic syndrome         www.ukdrn.org/patients.html
                                                                                   about diabetes research, and various
                                         I've come along to find out whether                                                                                          study). Others include; ADDRESS (a
People in Liverpool with an interest                                               other skills along the way. To find out
                                         there are any suitable trials into type                                             We are continuing to develop our         study on the After Diabetes Diagnosis
in diabetes had the opportunity to                                                 more please contact:
                                         1 diabetes as I would be interested                                                 Patient and Public Involvement           Research Support System), DARE
find out more about research into        in taking part." Following on from                                                  initiative, setting up a local PPI       (the Diabetes Alliance for Research
the disease at a recent city-wide                                                  Jo Palmer, PPI Coordinator,                                                        in England study, which aims to
                                         this successful event, the North West                                               group in Leicester. The main aim of
open day. Jointly organised by                                                     Tel: 020 7594 1057, email:                                                         build a data-bank for future use) and
                                         DRN is planning a similar event in                                                  the group will be to review local
North West DRN staff at Aintree                                                    joanne.palmer@imperial.nhs.uk or                                                   DIPMAB (Diabetes In Pregnancy
                                         the New Year for its Greater                                                        research literature, raise awareness
University Hospital and the Royal                                                  visit the NWL DRN website:                                                         focusing on Mothers And Babies).
                                         Manchester based sites.                                                             and promote diabetes research
Liverpool Hospital, the day brought                                                                                          within the community – but we hope
research staff, healthcare
                                                                                   www.ukdrn.org/lrn_nwlondon
                                                                                                                             that the group will also become more     Thames Valley
professionals, and people affected       North-West London
by diabetes together. Speaking at        The North West London DRN                 South East Midlands
                                                                                                                             involved in the research process by
                                                                                                                             commenting on proposals developed        The Thames Valley DRN is a                   Local Research
                                                                                                                                                                      partnership of GP practices and
the event, network manager Sue
Teasdale said: "The local research
                                         supports a range of research studies
                                         in both general practice and hospital
                                                                                   In April and May of this year, the
                                                                                   South East Midlands DRN was asked
                                                                                                                             by local researchers. Two South East
                                                                                                                             Midlands Writing Groups, established     hospitals in the Thames Valley,              Network Centres
network is helping to bring people       settings. Our local portfolio studies     by the University of Leicester to host    by the DRN to generate research          Coventry and Warwickshire areas.
with an interest in diabetes together    involve people with type 1 and type       a stand to celebrate the University’s     proposals and grant applications, will   The TVDRN is piloting a Link Nurse
from across the NHS. We need             2 diabetes, hypertension, and those       50th Anniversary and to promote the       lead to research projects that form      Scheme to raise awareness of                 • South West & Peninsula
people with diabetes to get involved     at risk of diabetes or cardiovascular     Open Day held by the Faculty of           part of the DRN portfolio.               diabetes research and the network.
in our research to make sure what        disease. As well as encouraging           Science & Engineering. Both events                                                 Up to 50 practices will take part in         • North West
we do is relevant to patients."          people to participate in research         were extremely busy with Network                                                   the 12-month scheme which will
                                                                                                                             South West & Peninsula                   pay for a named nurse from each              • South East Midlands
                                         studies we have been working hard         Nurses promoting the DRN and
As well as healthcare professionals,     to involve the NWL community in           offering people a simple screening        Two Patient and Carer Involvement        participating practice to work with          • Eastern
people also heard from James             other research activities.                assessment to see their risk level for    Workshops were held in the               the DRN for an hour a week or one
Flaherty, who has had type 2             Our Open Evening in March 2008            developing diabetes. Screening was        summer, one for those interested in      session per month. To date, 10               • North-West London
diabetes for 15 years and has been       brought together people with              a huge hit and proved popular with        type 1 diabetes in Torbay, and           practices have signed up in
                                                                                                                                                                      Berkshire, 6 in Buckinghamshire,
                                                                                                                                                                                                                   • Thames Valley
taking part in trials for 10 years.      diabetes, their carers, friends and       people of all ages, including             another in Truro for those interested
James said: "In my opinion it's to my    family members to find out about          members of the public and                 in type 2 diabetes. Both were            4 in Coventry, 9 in Oxford and               • North-East London
advantage taking part in trials. You     PPI and to share ideas on how they        University staff.                         successful and well attended. The        11 in Warwickshire.
get excellent care from the staff, you   would like to get involved. This event                                              afternoon sessions involved group                                                     • North East & Cumbria
are involved, you know what's going      and our visits to Diabetes UK             Within the South East Midlands,           discussions on possible topics for       Three non-commercial studies are
on and you understand more.              Support Groups provided the network       research activity continues to grow,      future research studies. Many good       currently being set up in the region,        For contact details,
Because of the trials, I know much       team with a valuable insight into how     with several prestigious Department       new topics were raised and these         including InCA (Insulin and
more about my diabetes. I also           patient and public involvement (PPI)      of Health grants secured. We are          will be explored by the Peninsula        Carbohydrate Adjustment) for young
                                                                                                                                                                                                                   please see page 12
understand better the alarms my          might work in NWL. We have used           about to embark on several large-         Diabetes Local Research Network.         adults with type 1 diabetes in the
body sends to me." Les Spencer has       the suggestions to develop our first      scale research projects to look at        We plan to run further research          Oxfordshire area. Four new
had type 1 diabetes for 17 years and     wave of PPI activities.                   screening for Type 2 diabetes,            events in the autumn.                    commercial studies are beginning to



04                                       DIABETES RESEARCH NETWORK UPDATE                                                                                             DIABETES RESEARCH NETWORK UPDATE                                             05
                                                                                                              Diabetes Research                      A Welsh Assembly Government            For more information on these
                                                                                                                                                     sponsored project on of Diabetes       items and to find out more about
Devolved Nations’                                                                                             Network Wales
                                                                                                                                                     Peer Support has been established      diabetes research in Wales, please
                                                                                                              Recently DRNW has increased it         within Rhondda-Cynon-Taff,             visit our website:
Update                                                                                                        workforce to include three Diabetes    Merthyr Tydfil and Rhymney Valley.
                                                                                                              Specialist Nurses to their team.       The project aims to raise              www.cardiff.ac.uk/medic/sub
                                                                                                              The nurses who are employed            awareness of issues relating to the    sites/drnwales
                                                                                                              within the Research Professional       prevention and self-management of
                                                                                                              Network of CRCC have direct            diabetes, including life-style,
                                                                                                              responsibility to support and work                                            or contact us on 02920 716928.
                                                                                                                                                     dietary and exercise regimes and
                                                                                                              with the DRNW in North, South          to support families and carers of
                                                                                                              East and South West Wales and          those individuals who are affected
                                                                                                              will be pivotal in both recruitment    by diabetes.
SDRN                                                                                                          to studies and in supporting the
University of Dundee                                                                                          clinical care of those with diabetes
Diabetes Support Centre                                                                                       in their areas.
Level 8
Ninewells Hospital



...............
Dundee DD1 9SY              Scottish Diabetes                          Northern Ireland
Tel: 01382 660111 x 34594
                            Research Network                           CRN Diabetes:                              Portfolio Update
                            The SDRN had a busy summer,                The Northern Ireland Clinical              The graph below shows the           The graph below shows the            DRN adoption process before
                            with the publication of the Year 2         Research Network (NICRN) was               breakdown of trials and studies     studies in the DRN portfolio by      inclusion.
                            Annual Report and the development          established by Research &                  in the DRN by type of diabetes.     funding group. ‘UKCRC partners’      ‘Non-commercial studies’ are those
                            of the Expansion Plan for the next 3       Development Office in Northern             Some studies look at both type      include the major funding            funded by non–commercial, non-
                            years (currently at consultation           Ireland in 2007 and has nine               1 and type 2, whereas others        charities, such as Diabetes UK       UKCRC partners. These go
                            stage). Building on its success so         clinical interest groups, one of           look at topics like structured      and the Juvenile Diabetes            through a similar adoption
                            far, SDRN has ambitious plans to           which is Diabetes.                         education programmes.               Research Foundation, as well as      process before inclusion.
                            make the Network truly nationwide,                                                                                        major research funding bodies,
                            enabling patients in Scotland to           The NICRN represents the five                                                  like the Medical Research            For more information about the
                            have equitable access to                   Health & Social Care Trusts in                                                 Council, the Wellcome Trust          UK Clinical Research
DRN Wales                   participation in studies, no matter        Northern Ireland, covering a                                                   and the National Institute for       Collaboration partners, please
Diabetes Research Unit      where they are based.                      population of over 1.5 million and                                             Health Research. These studies       visit their website, at:
Llandough Hospital                                                     is committed to developing,                                                    are automatically adopted into
Penlan Road                 The portfolio of studies continues to      promoting and co-ordinating                                                    the DRN.                             http://www.ukcrc.org/aboutus/th
Penarth



...............
                            grow with academic, commercially           research activity across the Trusts                                                                                 eukcrcpartners.aspx
Cardiff CF64 2XX            sponsored and epidemiological              within the available resources.                                                ‘Commercial studies’ are those
Tel: 02920 716928           studies using anonymised, linked                                                                                          funded by the pharmaceutical
                            data from national datasets. The           NICRN Diabetes has, in the last                                                industry. These go through the
                            national research register continues       few months, appointed three
                            to have an uptake rate of 80%              nurses to different sites across
                            amongst patients and is now                Northern Ireland and has formally          Diabetes portfolio divided by
                            recorded on the 'live' clinical            adopted its first studies including



                                                                                                                  ...............
                                                                                                                  type of diabetes
                            dataset, allowing searches for             work from the pharmaceutical
     NORTHERN IRELAND
CLINICAL RESEARCH NETWORK
                            eligible patients to be conducted          industry, a study of structured
                            using the most recent clinical data.       education in adolescents with type
                                                                       1 diabetes and an investigation
                            Training remains a priority. SDRN          into drug effects on insulin action.
                            published a Training Strategy for staff    The study portfolio continues to be         The portfolio database
                            earlier in the year, and the SDRN          developed bringing together
                                                                                                                   is available on-line via:
                            Training Officer visits registered sites   existing as well as new studies.
                            regularly to discuss training needs                                                    www.ukdrn.org/portfolio.html



...............
                            and to ensure Research Governance          Further information is available on                                            Diabetes portfolio divided by
                            guidelines are followed.                   the NICRN website:                                                             main funders

                            www.sdrn.org.uk                            www.nicrn.hscni.net


06                          DIABETES RESEARCH NETWORK UPDATE                                                                                         DIABETES RESEARCH NETWORK UPDATE                                           07
Patient Advocate




                                                                                                                                          .......................................
                                                                                                                   Operational Steering Group                                       Advocacy Group                                                     Joanne Holloway




                                                                                                                                                                                                             .......................................
Update                                                                                                             Membership                                                       Membership                                                         David Langley (Patient Adv)
                                                                                                                                                                                                                                                       David McCance
                                                                                                                   Desmond Johnston (Chair)                                         Prof David Matthews (Chair)
Operational Steering Group                                                                                         Patrick Bell (DRN N Ireland)                                     Atiya Chaudhry-Green (NDST)                                        Mary Perkins (Patient Adv)
Three Patient Advocates were                                                                                                                                                        Paul Chester                                                       Rowan Hillson (Dept of Health)
                                                                                                                   Sarah Buckland (INVOLVE)
                                                                                                                                                                                    tbc (Diabetes UK)                                                  Peter Scanlon
appointed to the OSG this year:                                                                                    Nish Chaturvedi
                                                                                                                                                                                    Janet Darbyshire (UKCRN)                                           Angela Shore
Nigel Crawford, Dianna Oxley and                                                                                   Nigel Crawford (Patient Adv)
                                                                                                                                                                                    Melanie Davies (SEM LRN)                                           Frank Sullivan
Sarah Hollis. Nigel and Sarah both                                                                                 Melanie Davies (SEM LRN)
took part in the Operational                                                                                       Robert Elkeles (NWL LRN)                                         Susan Enright (SEM LRN)
Steering Group for the first time on                                                                               Phil Evans (SWP LRN)                                             Clem Harris                                                        Reference Panel
17th June, following the DRN                                                                                       Andrew Farmer (TV LRN)                                           Annie Hutchings (DRN Wales)                                        Membership
Annual Conference which had                                                                                        Martin Gibson (NW LRN)                                           Shona Hynd (Scottish DRN)                                          Sheila Burston
taken place the previous day.                                                                                      Chris Griffiths (NEL LRN)                                        Eleanor Kennedy                                                    Nigel Crawford
The next meeting of the OSG is                                                                                     Andrew Hattersley (SWP LRN)                                      Martin Lodemore                                                    Rose Douglas
scheduled for Thursday, 20th                                                                                       Simon Heller (CSAG)                                              Bill O’Leary (NDST)                                                Christine Hunter
November 2008.                                                                                                     Rowan Hillson (Dept of Health)                                   Ralph Ormerod (Patient Adv)                                        David Langley
                                                                                                                   Graham Hitman (NEL LRN)                                          Michael Rodgers (Patient Adv)                                      Rachel Menday
                                                                                                                   Sarah Hollis (Patient Adv)                                       Roger Steel (UKCRN)                                                Nicola Moxey
Clinical Studies                                                                                                                                                                    Maryrose Tarpey (INVOLVE)                                          Diane Munday
                                                                                                                   Joanne Holloway
Advisory Group                         1. Developing a structured                                                  Simon Howell (Diabetes UK)                                       Janice Turner (Patient Adv)                                        Dianna Oxley
                                                                            Advocacy Group
At a meeting on 29th May, the             education programme for                                                  Kamlesh Khunti (SEM LRN)                                                                                                            Rebecca Parker
                                                                            The Advocacy Group met in                                                                               Clinical Studies                                                   Mary Perkins
CSAG confirmed the funding of             people with diabetes                                                     Nancy Lester (UKCRN)
                                                                            September, when Sir Michael Hurst                                                                                                                                          Yvonne Ratcliffe
three further Writing Groups for the   2. Detection and prevention of                                              Azeem Majeed                                                     Advisory Group
                                                                            gave a fascinating and passionate                                                                                                                                          Krystyna Reczko
DRN. These groups will develop            diabetic complications in                                                David Matthews                                                   Membership
                                                                            talk about his experiences in                                                                                                                                              Anne St Aubin Roberts
applications for funding for              children and adolescents with                                            Ann Millward (SWP LRN)                                           Prof Simon Heller (Chair)
                                                                            battling bureaucracy to improve                                                                                                                                            Peter Smart
research studies to complement the        Type I diabetes                                                          David Owens (DRN Wales)                                          Stephanie Amiel
                                                                            diabetes care, both in the UK and                                                                                                                                          Gareth Thompson
work already going on within the                                                                                   Dianna Oxley (Patient Adv)                                       Suki Balendra
                                       3. Prevention of type II diabetes    now internationally as Vice-           John Petrie (DRN Scotland)                                                                                                          Alan Wickes
network, filling gaps identified by                                                                                                                                                 Helen Colhoun
                                       4. Developing a programme of         President of the International         Angela Shore
the CSAG. Writing groups are now                                                                                                                                                    David Dunger
                                          work for black and ethnic         Diabetes Federation.                   Simon Thom (NWL LRN)
established in these areas:                                                                                                                                                         Louise Forster
                                          minority groups with diabetes     The next meeting of the Advocacy       Mark Walker (NEC LRN)                                            Iain Frame (Diabetes UK)
                                          with a focus on South Asian       Group is scheduled for Thursday,       Nick Wareham (E LRN)                                             Ruth Gillespie (JDRF)
                                          populations                       27th November 2008, when it is
                                                                            hoped that Adrian Sanders MP,
                                       5. Diabetes and pregnancy
                                                                            Chairman of the All-Party
                                       6. Telemedicine in Self-             Parliamentary Group for Diabetes,
                                          Management of Diabetes
                                          Mellitus
                                                                            will talk about the group’s work.      NOTICEBOARD                                                      DRN meeting dates for 2008:
                                       7. Neurodegenerative disease         Reference Panel                             Dates for the diary                                                Advocacy Group:
                                       8. Use of neuro-imaging to           The DRN Reference Panel will be           Diabetes UK Volunteers’                                          27th November – London
                                          investigate metabolic disorders   expanding in late 2008, with a            Conference
                                          related to diabetes                                                         18/19th October –                                             Clinical Studies Advisory Group                                     Are you a member
                                                                            dedicated forum made available via
                                                                            the DRN Portal, an on-line facility       Leeds                                                            24th November – London                                           of a Local Support Group?
                                       More information on these groups     hosted by the National Institute for                                                                                                                                        If your group would like to
                                                                                                                      INVOLVE Conference                                             Operational Steering Group
                                       is available from the coordinating   Health Research. People from                                                                                                                                                know more about the
                                       centre, or on-line at:                                                         11/12th November –
                                                                            across the country who have                                                                                20th November – London                                           Diabetes Research Network,
                                                                                                                      Nottingham
                                       http://www.ukdrn.org/csag.html       applied to become Patient                                                                                                                                                   please contact the
                                       The next meeting of the CSAG is                                                World Diabetes Day                                                                                                                coordinating centre. We
                                                                            Advocates with the DRN                                                                                          If you would like to
                                       scheduled for Monday, 24th           coordinating centre and who have          14th November                                                                                                                     would be happy to have
                                       November 2008.                                                                 DRN Patient Involvement                                            add a notice to this board,                                    someone from the network
                                                                            internet access will be invited to
                                                                            take part, and it is hoped to create      Conference                                                      please contact Martin Lodemore                                    present and answer
                                                                            a group with a broad range of             4th December –                                                     at the coordinating centre.                                    questions at your meeting.
                                                                            interests, backgrounds and                London
                                                                            experience which will influence
                                                                            future network activities.



08                                     DIABETES RESEARCH NETWORK UPDATE                                                                                                      DIABETES RESEARCH NETWORK UPDATE                                                                           09
                                                                     Want to be
                                   Training &                        Involved?
Website update
                                   Education                         The Diabetes Research Network
                                   Update                            needs people affected by
                                                                     diabetes to help guide its
                                                                     decisions – this is an integral
The DRN website is currently       The UKCRN training
                                                                     part of the network’s activities.
undergoing redevelopment to        programme for patient
improve the look and feel of       advocates is undergoing
                                                                     If you would like to become
the site. There will be some       strategic review, with a group
                                                                     involved with the activities of the
content changes and new            set to examine the needs of
                                                                     Diabetes Research Network,
pages to look out for,             patients and carers who want
                                                                     please contact:
including one on Experimental      to be involved in network
Medicine. Comments from            activities. This panel will
                                                                     Martin Lodemore,
Reference Panel members            meet in November 2008, and
                                                                     Patient & Public Liaison Officer
have been incorporated into        will include patient and public
the new design, which was          representatives from across       Tel: 020 7594 1796
adopted via a competition          the various networks, with the    Fax: 020 7594 3392
website with a community of        aim of identifying a range of     Email: m.lodemore@imperial.ac.uk
talented designers. The            studies to support people new
winning design was selected        to research, as well as those     or register with us via
from 21 entries and the            with more experience.             the website:
Coordinating Centre IS team is                                       www.ukdrn.org/patients
now coding this design. The        The DRN ran the ‘Introduction                                           Who’s Who at the Network Coordinating Centre
aim is to have it live by the      to Diabetes’ course in May,
end of October 2008.               this time hosted by the North      More information is available on
                                   East & Cumbria DRN, in             the Patients’ Pages, including
The number of hits on the          Newcastle. The course was          details of any current               Director                                                         Suki Balendra
DRN website increased              well attended and feedback         opportunities to become involved.    Professor Desmond Johnston                                       (Imperial College London)
dramatically following the         from the delegates was once                                             (Imperial College London)
launch of Diabetes UK’s            again very positive.                                                                                                                     Information Systems
‘Facebook’ page in early
August, which included a link      www.ukdrn.org/training.html
                                                                     “   Involving patient
                                                                         advocates leads to
                                                                                                           Assistant Director                                               Manager
                                                                                                                                                                            Lucy Smeaton
to the DRN for those                                                                                       Rosemary Sowden
                                                                                                                                                                            (Imperial College London)
interested in getting involved     www.ukcrn.org.uk/index/               better quality, more              (Imperial College London)
in research. Following this        training/courses
                                                                         relevant research.
launch, it is no surprise that
the most popular section has                                             Ralph Ormerod
                                                                                                      ”    Associate Directors
                                                                                                                                         Professor Desmond Johnston
                                                                                                                                                                            Information Systems Support
                                                                                                                                                                            Officer
been the Patient Pages.”                                                 Patient Advocate, Warwick         Professor David Matthews      Director of the DRN                Michael Igiebor
                                                                                                           (Oxford University):
                                                                                                                                                                            (Imperial College London)
DRN Website                                                                                                Consumer Advocacy             Project Manager
Top Five Pages:                                                                                                                          Dr Eleanor Kennedy                 Senior P.A.
                                                                                                           Professor Nish Chaturvedi
1. Patients                                                                                                                              (Oxford University)                Emanuela Mariani
                                                                                                           (Imperial College London):
2. Jobs                                                                                                    Industry                                                         (Imperial College London)
                                                                                                                                         Patient & Public
3. Local Research Networks                                                                                                                                                  P.A.
                                                                                                           Professor Azeem Majeed        Liaison Officer
4. Clinical Studies                                                                                                                                                         Clem Harris
                                                                                                           (Imperial College London):    Martin Lodemore
     Advisory Group                                                                                                                      (Imperial College London)          (Oxford University)
                                                                                                           Primary Care
5. Home
                                                                                                           Professor Angela Shore        Research Coordinators              Team Administrator
                                                                                                           (Peninsula Medical School):   Louise Forster                     Katherine Collum
                                                                                                           Experimental Medicine         (Imperial College London)          (Imperial College London)




10                               DIABETES RESEARCH NETWORK UPDATE                                                                        DIABETES RESEARCH NETWORK UPDATE                               11
                                                                          South East Midlands Diabetes LRN
Contact Details                       North West London Diabetes LRN
                                      Lead clinicians: Prof Robert        Lead clinicians: Prof Melanie Davies
Coordinating Centre                   Elkeles and Prof Simon Thom         and Dr Kamlesh Khunti
                                      Manager: Claire Smith               Manager: Susan Enright
London
International Centre for              Tel: 020 7594 3466                  Tel: 0116 258 7250
Circulatory Health                    1st Floor, ICCH Building            University Hospitals of Leicester
Imperial College London               St Mary's Hospital                  Leicester Royal Infirmary
St Mary’s Hospital                    59-61 North                         Infirmary Road
59-61 North Wharf Road                Wharf Road                          Victoria Building , Level 0
London W2 1LA                         London W2 1LA                       Leicester LE1 5WW
Tel: 0207 594 3390                    Email:                              Email: drn@uhl-tr.nhs.uk
                                      claire.smith@st-marys.nhs.uk
Oxford                                                                    North West Diabetes LRN
Oxford Centre for Diabetes,           North East London Diabetes LRN      Lead clinician: Dr Martin Gibson
Endocrinology and Metabolism          Lead clinicians: Prof Graham        Manager: Sue Teasdale
Oxford University                     Hitman and Prof Chris Griffiths     Tel: 0161 206 5584
Churchill Hospital                    Manager: Gill Hood
Headington                                                                Salford Royal NHS Foundation Trust
                                      Tel: 020 7882 2592                  Room B202, First Floor
Oxford OX3 7LJ
                                      Dept of Diabetes and Metabolic      Clinical Science Building
Tel: 01865 857312
                                      Medicine                            Hope Hospital
                                      Royal London Hospital               Salford M6 8HD
Email: drninfo@ukdrn.org              Whitechapel                         Email: ann.lundy@srft.nhs.uk
Website: www.ukdrn.org                London E1 1BB
                                      Email:                              North East & Cumbria Diabetes LRN
South West & Peninsula Diabetes LRN
                                      Gillian.Hood@bartsandthelondon.     Lead clinician: Prof Mark Walker
Lead clinicians: Dr Ann Millward,
                                      nhs.uk                              Manager: Anna Lartey
Prof Andrew Hattersley and
Dr Phil Evans                                                             Tel: 0191 282 0081
                                      Eastern England Diabetes LRN
Manager: Rosemary Sowden
                                      Lead clinician: Prof Nick Wareham   Clinical Research Facility
Tel: 01392 406984                                                         4th Floor Leazes Wing
                                      Manager: Sandra Mulrennan
Noy Scott House                                                           Royal Victoria Infirmary
                                      Tel: 01223 769169                   Queen Victoria Road
Royal Devon and Exeter NHS
Foundation Trust                      Box 285                             Newcastle Upon Tyne NE1 4LP
Barrack Road                          Addenbrooke's Hospital              Email: drn@ncl.ac.uk
Exeter EX2 5DW                        Hills Road
                                      Cambridge CB2 0QQ
Email: alison.foden@rdeft.nhs.uk
                                      Email: drn@mrc-epid.cam.ac.uk
Thames Valley Diabetes LRN
Lead clinician: Dr Andrew Farmer
Manager: Sharon Parsons
Tel: 01865 857511
                                                                                                 North East
Oxford Centre for Diabetes                                                                       & Cumbria

Endocrinology and Metabolism
Oxford University
                                                                            North West                South East
Churchill Hospital                                                                                    Midlands
Headington
Oxon OX3 7LJ
                                                                                                               Eastern
Email: TVDLRN@orh.nhs.uk                                                                                       England
                                                                                                              North East
                                                                                                               London

                                                                                                       North West
                                                                                           Thames
                                                                                                        London
                                                                              South West    Valley
                                                                               Peninsula



12                                    DIABETES RESEARCH NETWORK UPDATE

								
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