Early in 2013 NASS started work to develop our research priorities, working in partnership with the Faculty of Health and Medicine at Lancaster University.
While NASS does not have huge sums of money for research we are able to influence the research agenda. We wanted to ensure that our research priorities took account of the views of our members, the AS community generally and health care professionals
We asked NASS members to send in their priorities for research. More than 150 people sent emails containing detailed suggestions. Thank you to everyone who took the time to contribute. Your suggestions were invaluable.
The team at Lancaster University brought all these suggestions together and fed them into a one day workshop which was held on 2 February 2013 at the university and attended by 25 people, including NASS members, rheumatologists and physiotherapists. During the first part of the day research priorities were identified and then the group discussed how they would prioritise the areas of research they had identified.
We then shared the research suggestions from that day and gave you the chance to assess the suggestions and prioritise them in terms of how important they are to you. There was also the opportunity to tell us your research suggestion if you felt it hadn't been covered in the current suggestions. 716 of you took the time to take part in the research. Thank you!
These are your top 10 research priorities. You might also like to download and read the full report.
1. Develop a greater understanding of AS triggers that lead to flares
2. Evaluate different ways of improving GP and health care practitioner understanding of AS
3. Develop better understanding of the impact of fatigue on people with AS
4. Provide better understanding of the type of exercise needed depending on age/severity
5. Develop a self-management programme to help people manage their AS effectively
6. Review anti-TNF to help people make more informed decisions
7. Review efficacy and side effects of medications to help people make more informed decisions
8. Develop a greater understanding of the impact of dealing with other conditions associated with AS
9. Evaluate different strategies to manage pain
10. Improve information flow between primary and secondary care
10. Develop and evaluate different approaches to exercise