Closing the loop for Fabry disease and Pompe disease in the UK (RARE)

Study identification

• EU PAS number:
  EUPAS103426
• Study ID:
  103466
• Official title and acronym:
  Closing the loop for Fabry disease and Pompe disease in the UK (RARE)
• DARWIN EU® study:
  No
• Study countries:
  United Kingdom
• Study description:
  This study uses digital biomarkers in EMR data to support general practices with improving earlier diagnosis of patients with Fabry disease and Pompe disease help meet the objectives of the UK Rare Disease Framework and improve patient outcomes.
• Study status:
  Ongoing

Research institutions and networks

Institutions

Observational & Pragmatic Research Institute Pte (OPRI)

United Kingdom

Study timelines

Date when funding contract was signed

Actual:14/12/2021

Study start date

Actual:27/07/2022

Data analysis start date

Actual:23/12/2022

Date of interim report, if expected

Planned:07/02/2023

Date of final study report

Planned:14/12/2023

Sources of funding

Non-for-profit organisation (e.g. charity)

Other

Pharmaceutical company and other private sector 

More details on funding

Optimum Patient Care Global Ltd, Sanofi Global, Volv Global

Regulatory

• Was the study required by a regulatory body?:
  No
• Is the study required by a Risk Management Plan (RMP)?:
  Not applicable