UK National FSHD Patient Registry

• Research type

  Research Database

• IRAS ID

  339737

• Contact name

  Chiara Marini-Bettolo

• Contact email

  chiara.marini-bettolo@newcastle.ac.uk

• Research summary

  UK FSHD Patient Registry

• REC name

  North East - Newcastle & North Tyneside 1 Research Ethics Committee

• REC reference

  24/NE/0029

• Date of REC Opinion

  19 Feb 2024

• REC opinion

  Favourable Opinion

• Data collection arrangements

  Patient-entered questionnaires, including the TREAT-NMD Core Dataset for DM and other expert-approved data set items. Full list of questions, and data protection and storage information can be viewed on the registry website.

• Research programme

  Myotonic Dystrophy patient community in UK

• Research database title

  UK FSHD Patient Registry

• Establishment organisation

  Newcastle University

• Establishment organisation address

  International Centre for Life

  Central Parkway

  Newcastle upon Tyne

  NE1 3BZ