Fanconi anaemia registry - renewal

• Research type

  Research Database

• IRAS ID

  320880

• Contact name

  Stefan Meyer

• Contact email

  stefan.meyer@mft.nhs.uk

• Research summary

  Fanconi anaemia

• REC name

  North West - Liverpool Central Research Ethics Committee

• REC reference

  22/NW/0342

• Date of REC Opinion

  3 Jan 2023

• REC opinion

  Further Information Favourable Opinion

• Data collection arrangements

  To study the genetic and clinical spectrum of Fanconi Anaemia (FA), and the clinical course of patients with FA, we want to collect data of Fanconi patients with date of birth and treating centre, genetic subtype, physical manifestations, and spectrum and frequency of complications and their management later in life. A dedicated liaison nurse funded by the Fanconi charity in the UK will collect data will and keep safely at dedicated safe computer facilities at the Central Manchester Foundation Trust for analysis.

• Research programme

  The database will support research into clinical and genetic aspects of Fanconi anaemia, and inherited aspects of cancer.

• Research database title

  Fanconi anaemia

• Establishment organisation

  Manchester University NHS Foundation Trust

• Establishment organisation address

  Trust Headquarters, Cobbett House

  Oxford Road

  Manchester

  M13 9WL