Spinal Sarcoma Partnership

The Spinal Sarcoma Priority Setting Partnership (PSP) aims to bring together the spectrum of people with spinal sarcoma, their families, carers, charities and clinicians from each step in the patient care pathway, using the James Lind Alliance (JLA) process, to determine the Top 10 research priorities in Spinal Sarcoma.

Results will be publicised to help inform future research strategies.

A secondary benefit of the process is that it will help build and develop clinical, scientific, and patient networks across the United Kingdom to enhance teamwork and cohesion in treating spinal sarcoma.

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There are over 60 new diagnoses of spinal sarcoma each year in the United Kingdom, with many more patients living with the disease at various treatment stages. Spinal sarcoma may present late in the disease course when patients develop neurological deficits, impacting the disease's stage, the complexity of therapeutic procedures, overall survival, and health-related quality of life. Patients need a combination of surgical treatment, chemotherapy and radiotherapy; these treatments may themselves lead to disability, and patients require long-term follow-up to ensure that the disease does not reoccur. Although the absolute number of patients is small, because of improvements in treatment an increasing number of patients are living longer with complex medical problems.