Item refinement for SSiDU questionnaire

  • Research type

    Research Study

  • Full title

    Evaluation and refinement of candidate items for a novel patient reported outcome instrument for assessing the severity/impact of digital ulcers in systemic sclerosis

  • IRAS ID

    323402

  • Contact name

    Michael Hughes

  • Contact email

    Michael.hughes-6@postgrad.manchester.ac.uk

  • Sponsor organisation

    Northern Care Alliance NHS Foundation Trust

  • Clinicaltrials.gov Identifier

    1.0, 22MSK18-S

  • Duration of Study in the UK

    0 years, 6 months, 30 days

  • Research summary

    Digital ulcers occurring on the fingers and toes are common in patients with systemic sclerosis (often called 'scleroderma'). These ulcers are very painful and often slow to heal and difficult to treat sometimes needing hospital admission and even amputation. Assessment of digital ulcer status (e.g. healing or worsening)) can be very challenging and is typically based upon clinician opinion based on visual inspection of the ulcer alone. We have devised a new questionnaire for assessing the severity and impact of digital ulcers in systemic sclerosis (SSc). It is hoped that the questionnaire shall be used in future clinical trials and help deliver new treatments for people affected by SSc-RP. The purpose of this "cognitive de-briefing" patient interview study is to ensure the question wording of the draft questionnaire is easily and fully understood by people with SSc-DUs. This step in the development of this new PRO instrument is critical to the scientific validity and success of the eventual tool.

  • REC name

    North West - Greater Manchester South Research Ethics Committee

  • REC reference

    23/NW/0073

  • Date of REC Opinion

    25 May 2023

  • REC opinion

    Further Information Favourable Opinion