UK National Patient Registry for Myotonic Dystrophy

• Research type

  Research Database

• IRAS ID

  339707

• Contact name

  Chiara Marini-Bettolo

• Contact email

  chiara.marini-bettolo@newcastle.ac.uk

• Research summary

  UK National Patient Registry for Myotonic Dystrophy

• REC name

  North East - Newcastle & North Tyneside 1 Research Ethics Committee

• REC reference

  24/NE/0030

• Date of REC Opinion

  19 Feb 2024

• REC opinion

  Favourable Opinion

• Data collection arrangements

  Patient-entered data shared via password protected website. All database entries and contacts will be traceable through an audit trail. All the data will be stored and analysed via a secure server, more information is available on the registry website. Patient questionnaires available to view online without registration.

• Research programme

  Myotonic Dystrophy population in the UK and worldwide; patients, families, carers, doctors and other healthcare professionals, charities, regulators and industry stakeholders.

• Research database title

  UK National Patient Registry for Myotonic Dystrophy

• Establishment organisation

  Newcastle University

• Establishment organisation address

  John Walton Muscular Dystrophy Research Centre

  International Centre for Life

  Newcastle upon Tyne

  NE1 4EP