Core Outcome Sets (COS) are essential to improve consistency and comparability across clinical studies. In spinocerebellar degeneration (SCD), rehabilitation is a central component of care; however, outcome measures used in rehabilitation studies are highly heterogeneous, limiting evidence synthesis and clinical translation.
This project aims to develop a COS for rehabilitation in SCD. As the first phase, we will conduct a COSMIN-based systematic review to evaluate the measurement properties of clinician-reported outcome measures used in SCD rehabilitation research.
Existing COS relevant to neurological rehabilitation or movement disorders were reviewed through the COMET database. However, no COS specifically addresses rehabilitation outcomes in SCD, and existing COS do not adequately capture the disease-specific features such as progressive ataxia, multi-domain impairment, and long-term functional decline.
Therefore, a new COS specific to SCD rehabilitation is needed to standardize outcome selection, improve comparability across trials, and support the development of evidence-based rehabilitation strategies.
Subsequent phases of this project will include stakeholder engagement (clinicians, researchers, and patients), Delphi surveys, and consensus meetings to establish an internationally agreed COS.
Kazuhiro Miyata, Ibaraki Prefectural University of Health Sciences, Japan (PI)
Sota Kobayashi, Niigata University of Health and Welfare, Japan
Hirofumi Ogihara, Nagano University of Health and Medicine, Japan
Shuntaro Tamura, Ota College of Medical Technology, Japan
Hiroyuki Saito, Geriatrics Research Institute and Hospital, Japan
Tatsuya Igarashi, Bunkyo Gakuin University, Japan
Shota Hayashi, Gunma Paz University, Japan
Akiyoshi Matsugi, Shijonawate Gakuen University, Japan
Disease Category: Neurology
Disease Name: Spinocerebellar degeneration
Age Range: 18 - 100
Sex: Either
Nature of Intervention: Rehabilitation
- Clinical experts
- Consumers (patients)
- Methodologists
- Patient/ support group representatives
- Researchers
- Service providers
- COS for clinical trials or clinical research
- COS for practice
- Consensus meeting
- Delphi process
- Survey
- Systematic review
This study is part of a multi-phase project to develop a Core Outcome Set (COS) for rehabilitation in spinocerebellar degeneration.
Phase 1 will consist of a COSMIN-based systematic review to identify and evaluate the measurement properties of clinician-reported outcome measures used in SCD rehabilitation.
Phase 2 will involve stakeholder engagement, including clinicians, researchers, and patients, to identify important outcome domains.
Phase 3 will include a Delphi survey to prioritize outcomes, followed by a consensus meeting to finalize the COS.
This approach follows established COS development standards (COS-STAD, COS-STAP).