"Minutes from the reports, publications and research sub-group of the"
Page 1 of 2 Database of Children with Autism Spectrum Disorder Living in the North East Procedure for requesting involvement of Daslne in Research and Surveys The main aims of Daslne include: to support planning of services for children with autism spectrum disorder and their families to facilitate research. Therefore we are keen to discuss with local service planners how the database can help with gathering of information (beyond the anonymised reports already available on the website). In addition, a database is potentially a great way to find out answers to questions asked by families and others. Daslne wishes to enable research into questions of benefit to children. a) Local Surveys on Daslne participants Daslne will consider any survey request which would involve Daslne participants. To preserve confidentiality, Daslne will administer all the parts of a survey including selecting participants, sending out questionnaires, chasing up non-respondents, and so on. This applies whether the survey is just for one of the North East participating authorities, or for several. To avoid duplication of surveys, the title and contact person for the survey request will be posted on the website. The process will be as follows: i) Daslne requires a description of the study to be submitted (around 2 to 3 pages), including an outline of what exactly parents and children are required to do. ii) Daslne needs to see a copy of the information sheets, questionnaire(s) – and any other planned documentation. It is suggested that the information letter and consent form should follow the guidelines laid down by NRES for health studies. (See http://www.nres.npsa.nhs.uk/applications/guidance/#PIS) ii) For some studies, Daslne requires to see the planned procedure for research governance, including obtaining sponsorship and an Ethics Committee opinion. iii) The details of the study will be put forward to the Reports, Publications and Research (RPR) sub-committee. The committee sets meeting dates 6 times a year, advertised on the website. At least one parent member of the subcommittee will be at each meeting in order to reach decisions. Applicants are invited, if available, to attend a committee meeting to discuss the proposal. Some requests may be refused and the reasons will be given in writing. iv) Daslne requires to receive a copy of the Ethics opinion, once obtained, before the survey can go ahead. v) Cost recovery may be required from some authorities. Minimum costs may also be requested from Parent groups if they wish to undertake a survey through Daslne. vi) Daslne will be able to add on to the survey, for example, to include moving-house cards or newsletters to parents in the mailing. Version 5, rpr sub-committee, feb 2010 Page 2 of 2 b) Research A process similar to the one above will be followed for other kinds of research (eg. a researcher wishing to find out from parents about sleep difficulties) or approaching families to take part in a piece of direct research (eg. colour perception in young people with Asperger syndrome). Costs will be charged as appropriate. Principal investigators for research proposals are advised in the first instance to contact Professor Helen McConachie (firstname.lastname@example.org) or Professor Ann Le Couteur (email@example.com) or by the Daslne email. Criteria for research likely to be approved include: Relevance and importance for families Originality Scientific value Potentially able to influence policy Good design Feasible, ie. can be completed within the timescale Evidence of appropriate costing/funding Strategy for reporting findings Daslne will not overload families with research requests. In principle, the same family will not be approached about more than one project at a time, which implies not more than twice in one year (about a survey or other research). Thus some research may be delayed in its starting date. Researchers will be required to agree to the following: A copy of the full proposal, of the ethical opinion, and at completion a copy of the final report will be given to Daslne. Feedback is to be given to families about the research findings, agreed first with the Daslne RPR subcommittee, and added to the Website. Daslne may request to hold a copy of the actual data as an anonymised data set. For some studies, the consent form would include a request to parents for data to be held in a non-anonymised way (ie with data linked to individual Daslne participants, but not by name.) The researchers will consider giving incentives (such as vouchers) to parents for participation. There will be careful ‘branding’ of all Daslne approaches (logo on envelopes). All approved projects will be listed on the website with a brief description. Caveat re research requests Daslne cannot take responsibility for all potential ASD research in the North East. It can try to monitor autism research within the participating authorities, by asking the local Daslne coordinator to remind the district Autism Strategy Group to check on the Daslne website what research may already be happening. Local North East research groups will be informed by Daslne that it holds information on some of the research approaches being made to parents of children with ASD. Institute of Health and Society, Newcastle University, Sir James Spence Institute 3rd floor, Royal Victoria Infirmary, Newcastle Upon Tyne, NE1 4LP. 0191 282 1400 0191 282 4725 firstname.lastname@example.org www.ncl.ac.uk/daslne Version 5, rpr sub-committee, feb 2010