Scoliosis Priority Setting Partnership

13 April 2017

Scoliosis Priority Setting Partnership

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.    

The top 25 questions will be taken to a workshop in July 2017 where the final top ten will be agreed.

Final survey

 

Previous news January 2017

This year, the BSRF has been working with the James Lind Alliance (part of the National Institute for Health Research) to develop a Scoliosis Priority Setting Partnership (SPSP). The SPSP brings together clinicians, patients, carers, and researchers to identify a top 10 list of research priorities to focus on in the future. Together, we are investigating, discussing, and outlining research priorities into the management and treatment of scoliosis. In the summer of 2016 we received several hundred responses. It’s been an enormously useful exercise so far. Many thanks to all of those who have given their time to contribute. The Steering Committee will meet in 2017 to complete the process. We expect the SPSP to aid us to promote scoliosis research priorities to a wider range of potential researchers and to increase our levels of research funding.

 

Camilla Seckin: patient perspective

“I am thrilled to be the patient representative for the SPSP Steering Committee. I feel extremely privileged to be part of a project that has the potential to shape future research into, and medical developments for, scoliosis. I bring to the SPSP not only my own voice as a scoliosis patient but the views of many of the other patients I support through my work as a Regional Representative with the BSRF’s sister organisation, the Scoliosis Association (UK). I’m excited for the outcome of the SPSP in 2017.”

 

What questions do you have about scoliosis? Help us to make research relevant to you!


We want to find out what questions scoliosis research needs to answer, according to people of all ages with scoliosis, their family, friends and health professionals. 

We are asking you to complete a short survey (5-10 minutes approximately) to generate ideas. This will ultimately lead to a ‘top 10’ list of research questions to improve the health and wellbeing of people with scoliosis. 

The goal is to provide a clear direction for future scoliosis research so that funding can be targeted to the issues that people with scoliosis, their family, friends and health professionals have identified as priorities - and so that people with the condition will benefit. 

Scoliosis Priority Setting Partnership Survey

 

Previous news: February 2016

In late 2015 we had our first steering group meeting with the James Lind Alliance (part of the National Institute for Health Research) to work on a priority setting partnership (PSP). The PSP brings clinicians, patients, carers and researchers together to identify a top 10 list of research priorities to focus on in the future.

The partnership will investigate, discuss and outline research priorities into the diagnosis, management, and prevention of progression of scoliosis in the future. The aim of the partnership is to gather a wide range of views. This is an exciting opportunity that the BSRF is funding.

Many medical charities and organisations have already taken part in Priority Setting Partnerships for other areas of medicine e.g. Asthma, Depression, Dementia, Multiple Sclerosis. Further details and outcomes of their PSPs can be found at James Lind Alliance.

In the future, as a result of this initiative, we expect to be able to promote our research priorities to a wider range of potential researchers and to increase our levels of research funding.

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