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ANCR Board Meeting
Time:         Wednesday June 11th 2008, from 13 – 17
Venue:        The Icelandic Cancer Society, Skógarhlíð 8, Reykjavík
              Denmark: Hans Storm, Jørgen Olsen, Marianne L. Rasmussen
              Faroe Islands: Jóanis Erik Kötlum
              Finland: Timo Hakulinen, Risto Sankila
              Iceland: Laufey Tryggvadóttir, Jón G. Jónasson, Elínborg J. Ólafsdóttir
              Norway: Frøydis Langmark, Steinar Tretli, Freddie Bray
              Sweden: Åsa Klint, Jan Adolfsson

1. Opening (Laufey Tryggvadóttir)

2. Adoption of the agenda
The Agenda was adopted with three additions to item 7: Next Nordic Epidemiology
Meeting, a question from Jan Willem Coebergh and the Nordic Indicator Project.

3. Minutes of the ANCR Board Meeting on January 14th 2008
The minutes were accepted.

4. Short status reports from the Nordic Cancer Registries
Summary reports for Denmark, Faeroe Islands, Finland, Iceland, Sweden and Norway
are provided in Appendix A.

5. Brief NCU-related reports

ANCR-NCU meeting Bergen 21-22 April (Laufey Tryggvadóttir)
The purpose of the joint-meeting was to exchange knowledge and ideas related to
common interests regarding cancer research (agenda in Appendix B). The meeting
was very good, but it was of some concern that no Swedish NCU board representative
was present even though Sweden will be the next host of the NCU secretariat.

Current status of NCU-supported studies (Hans Storm)
Faroe Islands have been included in NORDCAN. See Appendix C for further
information on NORDCAN, the Nordic Survival- and High Resolution studies.

Summer School (Hans Storm)
The Summer School was very successful as usually. Many students wrote letters to
the director (Hans) stating their high level of satisfaction. Especially notable was a
letter from a Swedish PhD student who had previously attended the Summer program
Organized by Harvard School of Public Health and Karolinska Institutet. She wrote
that because of the high quality of the Nordic Summer School and with the Nordic
dimension added, she had benefitted very much from the experience. The Nordic
Summer School has now been rated and the course gives 12 EU points. It is likely that
NCU will provide funds for the next term (2009). It is on the plan to broaden the
scope of the school and add lectures on clinical epidemiology.

Nordic Childhood Cancer Survivor Study (Jørgen Olsen)
The aim is to collect Nordic cohort data on survivors from childhood cancer (0-19
years) on a continuing basis, facilitating long-term follow-up studies on late health
effects after diagnosis and treatment of childhood cancer, using our unique Nordic
resources for record linkage. NCU funded a mini seminar early in 2008, gathering
pediatricians (including NOPHO people) and epidemiologists from the Nordic
registries. Seminar attendants declared great interest in going ahead with the project
and the clinicians were eager to include also clinical information. The idea is to set up
long-term databases and update with new linkages every 3 or 5 years. Strategic
financial support will be sought from NCU for building up this Nordic research

6. International collaboration

ENCR (Freddie Bray)
Due to staffing problems and shortage of resources, the activities of ENCR have been
minimal for several years. However, there are great hopes for improvements now that
the ENCR-initiated ERA-NET FP7 EUROCOURSE project has been funded, and a
new IARC director has been appointed. There is need for a full time scientific co-
ordinator at IARC to take care of the ENCR activities. The majority of the Steering
Committee members have finished their term, so several new members will be elected
this year. It would be a better system if only half of the committee would be changed
every two years. Risto Sankila agreed to be the next ANCR representative in the
ENCR steering committee, replacing Laufey Tryggvadóttir who’s three-year term has
come to an end.

IACR (Timo Hakulinen)
Executive Board elections 2008: Brenda Edwards (SEER, USA) is the candidate for
president, Freddie Bray and Henrik Möller for general secretary and Sabine Siesling
for the European regional representative. Maria Paula Curado will continue as
Executive secretary until the end of 2008, when her term is out. Hopefully, Egil
Engen will continue as Treasurer. The 2008 meeting will be held in Sydney. The 2009
meeting in New Orleans and 2010 in Hakone (Japan). Norway may be the venue for
the 2011 meeting and Africa for 2012. The new edition of the book Cancer
Registration, Principles and Methods was sent to the IARC director, who disagreed
with the editors on some important aspects. This will cause some delay. There has
been progress in Automated Processes of Cancer Registration and the website has
improved. Developing countries have lost their contracts with IARC and registries
have to compete abut collaborative research agreement (CRA). The IACR
representative will meet with the new IARC director next year to search for ways to
improve the situation.

IARC (Timo Hakulinen)
The Governing Council has elected a new Director: Christopher Wild, Professor of
Molecular Epidemiology and Director of the Leeds Institute of Genetics, Health, and
EUROCARE (Timo Hakulinen)
www.eurocare.it. Four articles from EUROCARE-4 will be out soon in a special issue
of Eur J Cancer (EJC). The papers were sent to co-authors at the time of submission.
There is still a problem with Gemma Gatta and Riccardo Capocaccia in that they do
not take much notice of comments. The HR studies have not come out yet.

CONCORD (Timo Hakulinen)
The main article is still under review in Lancet Oncology. It describes cancer survival
in 5 continents, but was originally intended to cover only USA and Europe. A second
paper with life-table analysis has been submitted to Cancer. Half of the survival
advantages of USA over Europe is been explained by erroneous methodology.

EUNICE (Freddie Bray)
The project is finished and needs not to be on the agenda again. Two papers led by
Herman Brenner are near to submission. A paper is in preparation by Marc Arbyn on
cervical cancer mortality.

EUROCADET (Freddie Bray)
A special issue on EUROCADET, estimating attributable risk in Europe, is coming
out in EJC. PREVENT courses will be held in London in June and Copenhagen in

NOCCA (Laufey Tryggvadóttir)
First results will be submitted June 2008 to Acta Oncologica, where they will be
published in a special issue. There are 54 occupational groups, 7.454.847 individuals
and 2.7 million cancer cases in this census-based cohort study.

ACCIS (Freddie Bray)
Eva Steliarova-Foucher would like to continue with this Automated Childhood
Cancer Information System, but the future of it is still uncertain.

EUROCHIP-3 (Risto Sankila)
EUROCHIP-3 has been funded, as EU is interested in health indicators.

HAEMACARE (Risto Sankila)
A guide book with recommendations for the registration of haemopoietic- and
lymphatic malignancies is in writing, final meeting intended in October and most of
the work is finalized. Milena Sant is in charge.

7. Any other business (AOB)

A) Post-mortem diagnoses
Changing autopsy practices may have had some effects on incidence figures. Autopsy
rates were as high as 80% a few decades ago, but are now down to around 15%.

B) Next Nordic Epidemiologic Meeting will be held in Iceland in 2010.

C) Nordic Indicator Project – problems (Timo Hakulinen)
Survival is not a good indicator for screening-related sites. It was suggested to send an
ANCR person to the next meeting. This should be someone from the local cancer
registry of the country hosting the meeting.

D) Request from Jan Willem Coebergh on practical arrangements in the Nordic
countries for linking cohorts with registries and v.v. In Finland, the STAKES website
contains a description of this. Hans Storm will point that out to Jan Willem, and then
also put on the ANCR website a description of the practises in the various Nordic

E) Evidence-based decisions on screening etc. (Frøydis Lngmark)
Sometimes the Cancer Societies make decisions that are not evidence-based
(examples: target ages for screening, uptake of HPV vaccination). Frøydis will draft a
letter to NCU stating that ANCR is willing to help in making decisions on
controversial issues.

8. Next ANCR Board Meeting and ANCR Annual Meeting

Board Meeting January 16th in Stockholm. ANCR symposium in September in

Appendix A: Country-specific status reports
Appendix B: Programme of Joint NCU / ANCR meeting, Bergen, April 22
Appendix C: NCU-funded projects: status report
Appendix A: Country-specific status reports

In May 2008 the Danish Cancer Register was updated until 2004 and the publication
Cancer Incidence 2004 was publicised in May.
We have finished the modernization of the Cancer Register, and the Cancer Register
is from 2004 and onwards a fully electronically based register.

A project on the quality of the modernized Cancer Register has been initiated in May
2008, in cooperation with the Danish Cancer Society and a number of Clinical
By the end of 2008 the Danish Cancer Register will be updated until 2006.

The plan for publication in the next years is the following:

 Publication of Cancer Incidence 2005 and               October 2008
 2006 (the Cancer Register is then fully
 Publication of Cancer Incidence 2007                   Middle of 2009
 Publication of Cancer Incidence 2008                   End of 2009
 Publication of Cancer Incidence 2009                   End of 2010
 …and so forth.

Changes in staff in 2008
There are no changes in staff.

Changes in coding from 2004 and onwards
From 2004 data is received electronically at the National Board of Health and coding
is done electronically.

Furthermore, ICD-O1 has been converted to ICD-O3 and ICD-10

Period                       Diagnosis                                Topography and Morphology
1943-1977   ICD7
1978-2003   ICD7    ICD-10                                     ICD-    ICD-O3
                    (based on ICD-O1 converted back to 1978)   O1      (based on ICD-O1 converted back to 1978)
2004-       ICD10                                              ICD-

 - Finnish Cancer Registry moved to Pieni Roobertinkatu 9 (Lilla Robertsgatan) in
downtown Helsinki on 6 May 2008. Telephone numbers and e-mails remain the same.
 - Finnish Cancer Registry started using ICD-O-3 on 20 May 2008.
 - Breast cancer screening was expanded from 50 to 59 years to age group 60-69
years for those born in 1947. In 2008, those born in 1948 are included in the expanded
service screening target group. The provision of the service is obligatory for the

  - The book on Cancer in Iceland that we published in 2004 has been reprinted. This
new edition contains statistical information from 1957 to 2004. The main text has not
been altered very significantly from the previous publication. However some chapters
are omitted in this edition. We did allow some minor advertisements and therefore we
do not need to sell it, rather give it to those that might need it.
  - A new contract with DeCode Genetics is in preparation. Our emphasis is on
getting credit for our contribution to their scientific work. Less emphasis will be on
reimbursement for the contribution f the Icelandic Cancer Registry.
  - A new Agreement on cooperation has been signed with Merck Sharp & Dohme.
This concerns a) The long-term follow-up of the 710 women, who participated in the
HPV trial, and b) Assessing Vaccine impact in the population (VIP study) by
assessing HPV type distribution in the population before starting to use vaccines on a
large scale, and then again five years after. The other Nordic countries, except
Finland, do also participate in those studies.

      Cancer in Norway 2006 was published 18 December 2007 (in pdf, printed
       version January 2008). This year’s special issue part of Cancer in Norway was
       “Data quality in the Cancer registry of Norway”, with Max Parkin as guest
      We are developing a web-based system for receiving electronical notifications
       (KREMT, KREftregisterets MeldeTjeneste), which are being pilot-tested in
       January 2008.
      Clinical registries, with additional clinical data on treatment and follow up are
       being established, or have been established for cancers of the colon-rectum,
       prostate, breast, ovary, lung, lymphoma and malignant melanoma, polyposis
       and childhood cancer. These registries will use the KREMT-portal to receive
       notifications. The notifications will be event-based, meaning that a notification
       will be sent each time a diagnostic or therapeutic new event occurs.
      ICD-O-3 will be introduced for coding in 2008. it has already been used for
       lymphomas and leukaemias since 2002
      The Mammography program will be evaluated by an external panel on
       assignment from the Norwegian Research Council. Finance: 12 mill NOK.
      The Cancer Registry intends to start an evaluation of the cervical screening
      Follow-up studies of the HPV-vaccinations will take place
      Main topics in the Etiological department are biologically based hypotheses
       involving EMF, vitamin D, mathematical models for the growth rate of breast
       cancer using breast cancer screening data, frailty models for different types of
       cancer, cancer cluster studies and studies on several occupational groups plus
       hormones and dietary factors.
      Five doctoral dissertations in 2007. 13 doctoral candidates are working on
       their theses.
      Problem areas are financing of
               a) the clinical registries,
               b) the inclusion of the private mammography activities in the official
                  screening program,
               c) the digitalization of mammography,
               d) the evaluation of cervical screening,
               e) the optimisation and professionalization of the information from The
                 Cancer Registry to the media, health authorities and medical

- The new head of registry, Kristina Westerdahl, started in February 2008.
Unfortunately, only for a short term at the registry as she has just decided to move on
to a new job in August 2008.
- Barbro Lundh-Rozell has taken leave from position as medical consultative staff at
the Swedish cancer registry (since February). She plans to return in January 2009.
- Swedish cancer registry is now 50 years old which is celebrated with a mini-
symposium at Läkarstämman in Göteborg in November 2008 and a special
publication (“jubileumsskrift”)
- The report on basal cell carcinoma in Sweden during 2006 was published in March
- Cancerfonden and the cancer registry will publish Cancer i siffror together again
(probably in March 2009)
- The cancer registry is currently starting a user-evaluation of the cancer statistics
available from EpC to identify where we need to improve/modernize. The evaluation
will be targeted at both medical professionals, politicians, media and laymen. We are
expecting the results towards the end of this year.
-The INCA-platform is being continuously developed and is now functioning for 9
cancer registers and on benign register, the national hernia register. The current status
will be presented during the meeting.
- Swedish government has decided to offer vaccination against HPV to all girls in the
age 10-12 years. There is a suggestion that the cancer registry should register
additional information based on the screening program. More details to come.
Appendix B: Programme of Joint NCU / ANCR meeting
The Norwegian Cancer Society, Bergen, April 22

- Hans Storm:
      Introduction of the new web version of the NordCan.
      This project presents in an attractive way the incidence, mortality and
      prevalence statistics from 41 major cancers in the five Nordic countries.

- Timo Hakulinen:
      Nordic survival study.
      New results and a publication plan.

- Hans Storm/Jan Adolfsson:
       Detailed data from the quality registries. New results on rectal cancer.
       Pros and cons of going beyond the registry data.

- Laufey Tryggvadóttir:
      Results from the Nordic Occupational Cancer Study (NOCCA).

- Hans Storm:
       Nordic Summer School of Cancer Epidemiology:
       Report of an excellent progress plus some ideas of further development.

- Jørgen Olsen:
       The Nordic study of long-term survivors from cancer in childhood and
       adolescence. Nordic study centre on the health of long-term survivors from
       childhood cancer and their offspring.

- Frøydis Langmark:
       The Nordic Countries – a Paradise for Epidemiological research.
       NordForsk has stated that the Nordic Countries are also the best suited place
       in the world to do studies on social inequality, preventive measure –
       interventions and behavioural.

- Bjørn Møller:
       New predictions of cancer incidence and mortality that will take into
       account our knowledge of risk factors and possible interventions.

- Hans Storm:
       UICC meeting on cancer registries.
       A session set up upon the proposal of the NCU as a showcase for what can
       be done if you do it the way we do. The session will bridge between cancer
       societies, cancer registries, the clinical world, modern biobanks and

- Hans Storm:
        Eurocourse – the ERA-net supporting cancer registration in Europe.
       This FP7 programme, recently funded, is heavily influenced by the Nordic
       countries. The aim is to create sustainable funding for registries to be able to
       do the monitoring.
Appendix C: NCU-funded projects, status report

Status of Nordic Projects supported by NCU
This status report describes the development relative to the previous report from 9
January 2008

Years covered
The web-version 3.2 now includes the Faeroe Islands. Data from the Faroe Islands are
new and should be considered preliminary. They are not included in the "Nordic
countries" group and prevalence is not available yet. Preliminary Danish mortality
data 2002-2006 has also been included and will be updated with final data when they
are ready sometime this year.
The Danish incidence data 2004 has just been published, the first year made by
linkage of data from the Hospital inpatient Register and the Pathology register.
According to the plans of Danish Cancer Registry in the National Board of Health
incidence data from 2005 and 2006 will be ready in 2008.
The web-version of NORDCAN will this June be updated with Danish incidence
2004, Finnish incidence and mortality 2006, and Norwegian Incidence 2006 and
Norwegian mortality 2005.

Data availability version 3.2 May 2008
Country                                  Incidence      Mortality        Prevalence
Nordic countries                         1960-2003      1953-2004         1980-2003
Denmark                                  1943-2003      1951-2006         1960-2003
Faeroe Islands                           1960-2003      1991-2001              -
Finland                                  1953-2005      1953-2005         1973-2005
Iceland                                  1955-2006      1951-2006         1973-2006
Norway                                   1953-2005      1953-2004         1973-2005
Sweden                                   1960-2006      1952-2005         1980-2006

Prevalence and Cancer Stat Fact Sheets
Prevalence can now be shown in tables and figures for 1, 3, 5, and 10 year following
diagnosis as well as for all years. Both number and population proportions can be
found and there is also a choice of crude and age-standardized proportions with the
usual 3 standards, World, European, and Nordic.

A Cancer Stat Fact Sheet summarizes key numbers and figures of trends and age
distribution for a country and cancer on one page. At the web-site of the Danish
Cancer Society these will be available at the pages for each cancer site thus ensuring
updated information at all times.

Nordic survival
Negotiations of publication of Trends in cancer survival in the Nordic countries 1964-
2003 as a supplement in Acta Oncologica are ongoing. 5 year relative survival for 5-
year cohorts from 1964-2003 will be shown in tables and figures for all the 40 cancer
sites excluding non-melanoma skin in the 5 Nordic countries based on NORDCAN
data. Follow up for death through 2006 has been made. The project group for the
Nordic Survival project will meet 10 June, just before the ANCR-board meeting.

High resolution studies
Progress has been made in the work for all the sites, but no new publications are yet

Breast cancer
Some errors in the Danish and Swedish data have been identified. This calls for a
check of the final analyses for both the Danish-Swedish treatment paper and for the
Nordic comparison and we hope for manuscripts later this summer.

Rectum cancer
Manuscript is under way.

Colon cancer
Data for patient diagnosed around 1997 will be used. Danish data is now collected
and preliminary analyses have started. Norwegian data collection will finish within a
few months. Swedish data stem from regional clinical registers and are thus readily
available. Finnish and Icelandic data comes from the colorectal dataset also used for
rectum cancer and enhanced Scottish cancer register data are ready. Work on the joint
analyses will have a high priority this fall.

Prostate cancer
Analyses of the Danish and partly the Swedish data have started. The supplementary
data collection in Iceland is well under way. The collection of the Norwegian data is
not yet started but all permissions are in order.

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