NASS encourages and supports research into the causes, 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.
Genetic Research Programme, Oxford University
AS is a condition which involves a number of genes. Funded by the Wellcome Trust, the genetic research programme is aiming to identify all the genes associated with AS. Genetic research is the way forward to an improved understanding of AS. Everyone with AS is urged to take part by giving a simple saliva sample: click here to find out more.
In June 2009 NASS gave a grant of £15,000 for a DPhil student, David Harvey, to conduct genetic research at the University of
Oxford into the role of ERAP1 in AS.
His work has been of fundamental importance to the understanding of one of the genetic reasons that some people become genetically predisposed to develop AS. He was able to confirm an association between predisposition to AS and variation in a gene known as ERAP1. He was able to manufacture large amounts of this protein in the laboratory and investigate its chemical structure and functions.
The results of David's work show us that different forms of ERAP1 work more or less efficiently in conjunction with HLA-B27 to stimulate immune responses and inflammation.
Most excitingly, from the research it has been possible to identify chemicals that can bind to ERAP1 which have the capacity to reduce its function in a way that could be potentially useful as a drug treatment for AS.
In April 2011 NASS awarded a grant of £62,000 over 3 years to support the employment of a post-doctoral research assistant in bioinformatics to work on the identification and validation of genes involved in AS.
Welsh Arthritis Research Network (WARN)
The Welsh Arthritis Research Network (WARN) was established by the National Institute for Social Care and Health Research and the Welsh Government and includes clinicians, researchers and patients.
The aims of the network are to promote and facilitate high quality research in Wales by building research collaborations, increase income awarded to Welsh Arthritis Research, improve participation in Welsh Government funded studies, harness and build on expertise to enhance further success and increase knowledge which can be translated into real benefits for people with musculoskeletal and arthritic conditions.
Further information about the WARN, for instance, research activities, publications, members and research resources are available on the WARN website.
'Living with AS', University of Swansea
A study of people with AS living in Wales. For more information use the following link to visit the AS in Wales website.
Scotland and Ireland Registry for Ankylosing Spondylitis (SIRAS)
SIRAS is a collaboration between the Scottish Society for Rheumatology, Northern Ireland Rheumatologists and the University of Aberdeen. It is a registry of people in Scotland and Northern Ireland with AS. They have identifed well over 1,500 patients to date and recruitment is continuing.
SIRAS are asking people with ankylosing spondylitis (AS) who live in Scotland or Northern Ireland to fill out a questionnaire that asks about what it's like to live with AS. With your consent, the answers you provide in the questionnaire will be combined with some of your medical history of AS for instance your BASDAI score. This will help SIRAS create a large pool of data that can be used to direct future research into AS.
Currently, the research team is looking at predictors of quality of life in AS, factors which impinge on work, and the effects of the disease on driving.
Study participants are also asked to donate a small saliva sample, to help determine the genetics of AS.
Patients may be invited to take part in the study by a letter from their rheumatologist. If you would like further information you can email the team at SIRAS.
Services for people with ankylosing spondylitis in the UK - a survey of rheumatologists and patients
This is the first study to explore the services available to people with AS in the UK. Back in February 2010 we asked 2,000 NASS members to take part in the survey and 827 completed it. At the same time all the rheumatology units in the UK were also sent a survey asking about the services they offer to people with AS. Out of 171 rheumatology departments, 117 replied.
The study found that despite increasing awareness of AS in the UK, diagnostic delay remains a concern. Access to anti TNF therapy was also a problem, with fewer hospital patients being assessed for anti TNF than are likely to be eligible. Nearly a third of NASS members were not currently being seen in secondary care.
If you would like a copy of the research paper please contact Sally Dickinson.
NOTE: Taking part in a clinical trial
It is an exciting time in the treatment of AS. The anti TNF drugs have been a major development in the treatment of people with severe disease. There are drugs which are now being considered for the treatment of AS which have been used to treat people with other rheumatological conditions. This means that you may be asked to take part in a clinical trial for one of these new drugs. It is not the role of NASS to recruit for trials but if you want further general information about ongoing clinical trials then Clinicaltrials.gov is a useful website to search.
Taking part in a clinical 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.
Last reviewed: January 2012