Fabry Database V1

• Research type

  Research Database

• IRAS ID

  325613

• Contact name

  Ashwin Roy

• Contact email

  ashwinroy@nhs.net

• Research summary

  Markers of prognosis in Fabry Disease

• REC name

  West Midlands - South Birmingham Research Ethics Committee

• REC reference

  23/WM/0180

• Date of REC Opinion

  18 Aug 2023

• REC opinion

  Favourable Opinion

• Data collection arrangements

  Data will be handled, stored and disposed in accordance with the UK Data protection act 2018 and European GDPR legislation.

  Data will be stored for 10 years following entering of the last patients data. Future studies can be carried out with the data unless additional data is collected.

• Research programme

  Fabry Disease community PhD programmes within the Institute of Cardiovascular Sciences

• Research database title

  Markers of prognosis in Fabry Disease

• Establishment organisation

  University of Birmingham

• Establishment organisation address

  Institute of Cardiovascular Sciences and Institute of Applied Health Research

  University of Birmingham

  B15 2TT