UK Fibromuscular Dysplasia Study

  • Research type

    Research Study

  • Full title

    United Kingdom (Uk) research study for Fibromuscular Dysplasia (FMD)

  • IRAS ID

    291394

  • Contact name

    Constantina (Tina) Chrysochou

  • Contact email

    tina.chrysochou@nca.nhs.uk

  • Sponsor organisation

    Northern Care Alliance NHS Foundation Trust

  • Duration of Study in the UK

    10 years, 0 months, 0 days

  • Research summary

    FMD is a rare condition of unknown etiology and pathogenesis. Little is known about the risk and determinants of complications and progression of the disease. Data from American and European FMD registries have started progressing knowledge and understanding of this condition which may be more common than thought.

    We wish to set up the UK’s first national study of patients with FMD which will feed into the international effort under the European/International Fibromuscular Dysplasia Registry and Initiative (FEIRI). This will be an observational, multi-centre study with optional bio-banking for genetics and biomarker studies. Our aim is to align our data collection fields with those of European counterparts to enable comparative data in FMD as well as overlap conditions e.g. Spontaneous Coronary Artery Dissection (SCAD).

    In order to achieve this, we wish to enrol directly into the European/International Fibromuscular Dysplasia Registry and Initiative (FEIRI) online portal which allows for a UK specific portal and data control.

  • REC name

    Wales REC 3

  • REC reference

    22/WA/0067

  • Date of REC Opinion

    4 May 2022

  • REC opinion

    Further Information Favourable Opinion