Help Shape Research on Exercise & Strength Training
About the Researcher
Sophie Barlow has worked at the Royal National Orthopaedic Hospital (RNOH) for 15 years. She joined the multidisciplinary clinic for Osteogenesis Imperfecta (OI) in 2019 and has completed two research projects exploring the therapy needs of adults living with OI. Through her clinical work in specialist services, she has had the privilege of supporting individuals with a wide range of rare bone conditions. Over time, she has developed a strong passion for creating personalised exercise programmes for people with rare bone disorders. She has recently been awarded an NIHR Pre‑Doctoral Fellowship to further investigate this important area of care.
Research Aim
To explore exercise and strength training in individuals with rare bone conditions, including its acceptability and safety.
Participant Role
- The study is seeking a small, diverse group of people living with a rare bone condition to help shape the research proposal. Participants will play a key role in ensuring the study design reflects the needs and experiences of the rare bone community and will be invited to offer suggestions to strengthen the research.
- Participants will be asked to read lay summaries of current and future research.
- Their insights will directly influence the development of Sophie’s PhD research proposal.
Commitment
- Four focus groups will be held over an estimated two‑year period: April 2026, July 2026, January 2027, and May 2027. Sessions may take place in person, virtually, or as a combination of both.
- Participants will receive a £25 voucher for each one‑hour focus group, along with reimbursement of travel expenses.
- Refreshments will be provided for in‑person sessions.
- Carers are welcome to attend, and all in‑person groups will be held in accessible facilities (Stanmore Outpatients Building).
Further Information and to Register your interest click HERE
