Current studies in AS

NASS encourages and supports research into the cause, genetics, management and treatment of AS and works closely with researchers and medical practitioners on studies that will have a direct benefit for people with AS.

Future Research Suggestions, Arthritis Research UK (formerly arc) Clinical Studies Group for Spondyloarthropathies (CSGs)

Late 2009 the Arthritis Research UK set up a Clinical Studies Group in Spondyloarthritis (SpA), the disease area which includes AS, with the aim to produce an effective strategy for clinical studies for the future. Patient involvement is seen by arc as an important part of this process. People with AS are being offered the opportunity to put forward ideas that they think should be a research priority for future research into AS. Click here to find out how you can take part.

Genetic Research Programme, Oxford University

Funded by the Wellcome Trust the Genetic Research Programme is aiming to identify all the genes associated with AS. Two genes have already been identified from what may be as many as 20 different genes. Genetic research is the way forward to improved understanding of AS and to better treatments. Everyone with AS is urged to take part: click here to find out more.

Kennedy Clinical Trials Unit at Charing Cross Hospital, Imperial College London

A research study into a possible new drug treatment for AS. For further information click here.

'Living with AS', University of Swansea

A study of people with AS living in Wales. For more information and to find out how you can take part please click here. AS in Wales Newletter please click here

NASS Rheumatology Patient Experience Survey

In a response to the Department of Health's 'Creating a patient-led NHS' Improvement Plan NASS conducted a survey of members to collect information relating to the treatment they have received from the NHS and what they think the NHS should be offering people with chronic conditions such as AS. The survey is now closed and results are currently being analysed. The results of this survey will be used in our campaigning work to improve standards of care for all people with AS.

NASS Survey on Work

Work and work related issues have long been a concern for many people with AS. In October 2009 NASS conducted a survey on work to gain a better understanding of the effects of AS on working life and identify work-related issues faced by people with AS. The results of the survey were discussed with a panel of experts who formulated a set of recommendations for government, employers, employees and healthcare professionals to help people with AS enter, remain or return to work. Click on the following link to read the full report:

NASS Survey: Working with ankylosing spondylitis

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Note:

Clinical Trials

It is an exciting time in the treatment of AS. The anti TNF drugs have been a major development in treatment of severe disease and there are drugs which are now being considered for the treatment of AS which have been used to treat other rheumatological conditions. This means further clinical trials in people with AS: you may be approached to take part in such a trial. It is not the role of NASS to recruit for trials but if you wanted further general information about clinical trials and what is involved, there is a useful booklet written by the European Genetic Alliances Network (EGAN) in easy to understand language which you can find on rheir website at:

http://www.eurogenguide.org.uk/.

Taking part in a trial is something you need to think about very carefully and you should always feel you have a reasonable understanding of what you are being asked to do and the risks involved. If you are not clear about something, always ask even if you feel the answer to the question should be obvious or it makes you feel a bit foolish: it is your own health which is involved after all.

This page was last updated: 16 April 2010