No-one should go through scoliosis alone. With your help we can support people with scoliosis and their families
Scoliosis Priority Setting Partnership
Scoliosis PSP Update
As you are aware, the aim of the Scoliosis PSP is to identify the unanswered questions about the diagnosis and management of scoliosis in people of all ages, from patient and clinical perspectives, and then to prioritise those questions that patients and clinicians agree are the most important.
Cause-related questions lie out of the scope of the exercise. However SAUK will try to answer these questions in the coming months.
In January, 2017, the Steering Committee will enter the final stages of the PSP. The committee will meet to agree to a list of questions to send to the all those interested to vote on the top 10.
Scoliosis Priority Setting Patnership
We are delighted to announce SAUK’s participation in a Scoliosis Priority Setting Partnership (SPSP). The partnership is facilitated by the James Lind Alliance. The SPSP has been set up to identify unanswered questions about the diagnosis and management of scoliosis. Research topics are often decided in the laboratory or by the drug industry, and do not always reflect what is important to patients. So we want to gather the views of patients, carers, family members, and health and social care professionals, which will help to ensure that future research is aligned with what matters to you.
SAUK would be very grateful if you could contribute to the SPSP by taking part in a survey. It will take about 5 minutes to complete and our main request is to ask you what your top three unanswered questions about scoliosis are. To help you we have made three suggestions, but many other questions are bound to concern you so please raise the issues that concern you most.
- Is bracing successful in the majority of cases or is surgery inevitable?
- Will physical therapy treat Scoliosis?
- Is there a link between degenerative Scoliosis and osteoporosis?
The process is being facilitated by the James Lind Alliance (JLA) to ensure that it is done fairly and transparently. All the questions received will be grouped by topic and checked against published research to see if they have already been answered. If pre-existing answers are found, they will be published on our website.
New and unanswered questions will be ranked in order of importance by people with scoliosis, carers, and health and social care professionals.
The end result will be a 'Top 10' list of research questions. These will be widely publicised, and we will then work together to set up new research projects with researchers and research funders, and, where appropriate, the pharmaceutical industry. The British Scoliosis Research Foundation is funding this partnership and we are grateful to our sister organisation for their support.