Myotubular and Centronuclear Myopathy Patient Registry

• Research type

  Research Database

• IRAS ID

  192504

• Contact name

  Chiara Marini-Bettolo

• Contact email

  Chiara.Marini-Bettolo@newcastle.ac.uk

• Research summary

  Myotubular and Centronuclear Myopathy Patient Registry (MTM and CNM Registry)

• REC name

  North East - Tyne & Wear South Research Ethics Committee

• REC reference

  15/NE/0390

• Date of REC Opinion

  4 Dec 2015

• REC opinion

  Further Information Favourable Opinion

• Data collection arrangements

  Details about the patient's disease to aid potential clinical trial recruitment in the future in a secure online database.

• Research programme

  All those with myotubular and centronuclear diseases.

• Research database title

  Myotubular and Centronuclear Myopathy Patient Registry (MTM and CNM Registry)

• Establishment organisation

  Newcastle University

• Establishment organisation address

  International Centre for Life

  Central Parkway

  Newcastle upon Tyne

  NE1 3BZ