Hypermobility Core Outcome Set and Measurement: Delphi Consensus Study

• Research type

  Research Study

• Full title

  Development of a core outcome set and measurement for hypermobility spectrum disorders and Ehlers-Danlos syndrome: a Delphi consensus study

• IRAS ID

  326855

• Contact name

  Natalie Clark

• Contact email

  natalie.clark17@nhs.net

• Sponsor organisation

  South Tees Hospitals NHS Foundation Trust

• Duration of Study in the UK

  1 years, 6 months, 0 days

• Research summary

  Hypermobility spectrum disorders (HSD) and Ehlers-Danlos syndrome (EDS) are predominantly recognised by joint hypermobility. As well as this, the conditions carry additional symptoms like pain, fatigue, dizziness, anxiety, social isolation behaviours, strained relationships, and financial problems due to employment restrictions.

  This is a Delphi consensus study consisting of two stages with a maximum of three rounds each. The study aims to reach a consensus amongst key stakeholders on the most important and relevant symptoms and how best these will be measured.

  Key stakeholders will consist of:
  1. Patients (16 years of age or older) with HSD/EDS
  2. Carers (including friends and family) of individuals with HSD/EDS
  3. Healthcare and allied health professionals who work with HSD and EDS

  Stage 1: Determining the core outcome set
  Participants will be presented with a list of pre-populated items (symptoms, conditions, impact) and asked to rank the importance of each item. This list has been generated from a recently published scoping review.

  Stage 2: Determining the core outcome measurement instruments
  Participants will be presented with a list of measurement instruments used to assess the items that met consensus in Stage 1 and asked to rank the importance of each measurement instrument.

• REC name

  East Midlands - Leicester South Research Ethics Committee

• REC reference

  23/EM/0143

• Date of REC Opinion

  6 Jul 2023

• REC opinion

  Further Information Favourable Opinion