Aim:
This project aims to develop a core outcome set for radial dysplasia.
Objectives:
1) To perform a systematic review of the literature on radial dysplasia, and produce a comprehensive long list of all outcomes reported in studies of radial dysplasia.
2) To supplement the long list with additional outcomes deemed relevant by patients, their parents, surgeons and hand therapists during the first round of a Delphi process.
3) To use Delphi consensus methods to refine the outcome long-list into a core outcome set agreed by the key stakeholders listed above.
4) To host one or more consensus meetings with the key stakeholders listed, ratify the core outcome set and disseminate it to congenital hand surgeons and researchers globally.
Nature of interventions:
Surgical or non-surgical primary management of radial dysplasia.
Supervisors:
Professor Malcolm Logan BSc Phd
Mr Bran Sivakumar, MD FRCS (Plast)
Miss Gill Smith, FRCS (Plast)
Research Fellow:
Mr George Murphy, MA MRCS
Disease Category: Child health, Genetic disorders
Disease Name: Radial dysplasia
Age Range: 0 - 100
Sex: Either
Nature of Intervention: Management of care, Surgery
- Clinical experts
- Families
- Patient/ support group representatives
- Researchers
- Service users
- COS for clinical trials or clinical research
- COS for practice
- Consensus meeting
- Delphi process
- Systematic review
The project will involve three stages:
1) All outcome measures reported for radial dysplasia will be gathered by a systematic review of the literature.
2) A three round Delphi process involving key stakeholders (patients, parents, paediatric hand therapists and congenital hand surgeons) will contribute any additional outcomes in the first round, then refine the long list into a core outcome set.
3) The putative core outcome set will be ratified at consensus meetings with the key stakeholders listed.