Development of items for ASRAP questionnaire

  • Research type

    Research Study

  • Full title

    Development of a novel questionnaire for assessing Raynaud’s phenomenon in systemic sclerosis

  • IRAS ID

    251873

  • Contact name

    John D Pauling

  • Contact email

    JohnPauling@nhs.net

  • Sponsor organisation

    Royal United Hospitals Bath NHS Foundation Trust

  • Duration of Study in the UK

    0 years, 3 months, 21 days

  • Research summary

    Raynaud's phenomenon describes episodic narrowing of the blood vessels of the fingers in response to cold exposure and/or emotional stress. Attacks of RP are associated with digital colour changes, pain, numbness and loss of function. RP is a feature of systemic sclerosis (SSc) and has been highlighted as one of the commonest and most intrusive symptoms in the disease.The episodic nature of RP has made measuring RP challenging and existing patient-reported outcome (PRO) instruments haven't performed very well in RP clinical trials. We have devised a new questionnaire for assessing the severity and impact of Raynaud's phenomenon (RP) 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-RP. This step in the development of this new PRO instrument is critical to the scientific validity and success of the eventual tool.

  • REC name

    South Central - Oxford A Research Ethics Committee

  • REC reference

    18/SC/0579

  • Date of REC Opinion

    10 Oct 2018

  • REC opinion

    Favourable Opinion