The UK-MPN-MF Registry

  • Research type

    Research Study

  • Full title

    The UK Myeloproliferative Neoplasms Registry for Myelofibrosis

  • IRAS ID

    263036

  • Contact name

    Nauman Butt

  • Contact email

    nauman.butt@rlbuht.nhs.uk

  • Sponsor organisation

    The Clatterbridge Cancer Centre NHS Foundation Trust

  • Duration of Study in the UK

    2 years, 11 months, 31 days

  • Research summary

    Myelofibrosis (MF) is a rare disorder of the bone marrow, causing scarring and abnormal blood cell production. Symptoms can include enlarged spleen, bone pain, itching, night sweats, pain, weight loss, tiredness and weakness. Treatment options are varied and aimed at controlling symptoms and slowing progression. There is currently limited data about treatment and outcomes of MF patients in the UK, being one of the few major European countries without a national MF registry. This study aims to improve understanding of the diagnosis, management and outcomes for UK patients with MF for comparison with those reported by other national registries.

  • REC name

    North West - Liverpool Central Research Ethics Committee

  • REC reference

    19/NW/0683

  • Date of REC Opinion

    8 Jan 2020

  • REC opinion

    Further Information Favourable Opinion