Scoliosis Priority Setting Partnership

Scoliosis PSP Update - July 2017

Our final survey has now closed and the James Lind Alliance are collating the data from the surveys. A panel of patients, carers, healthcare professionals and charities will meet in November to discuss the results and agree on the final top 10 research priorities. 

 

 

Feb 2017

Help to set priorities for scoliosis research.

Following our first survey, which closed in October 2016, we have identified a list of questions that have not yet been answered by research.

This is based on suggestions made by over 700 people with scoliosis, their relatives and carers, and healthcare professionals.

We now need your help to prioritise the questions in this list.

We want to hear from:

  • people of any age with any form of scoliosis
  • friends, relatives and carers of people with scoliosis
  • healthcare professionals working with people with scoliosis
  • organisations and charities working with people with scoliosis

Please tell us which of the questions you want research to answer. You do not need to know about research – just tell us what is important to you based on your own experience.    


Final Survey

 

 

 

 Jan 2016

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.

Scoliosis Priority Setting Partnership Survey