RDF19 Poster Detail
|How a Centre for Rare Diseases can Enhance Patient Experience|
The Centre For Rare Diseases (CfRD) opened on 1st September 2015; situated within the Institute of Translational Medicine (ITM) at University Hospitals Birmingham (UHB).
The CfRD and ITM follow the robust governance, management, and research policies and procedures embedded within the NIHR/WT Clinical Research Facility (CRF) and an established CfRD operations group meets to discuss new applications for space, staffing and equipment use, and reviewing ongoing activity in a fair and consistent way.
The development of multiple and sizeable Rare Disease cohorts has already supported timely recruitment to clinical trials, including some of the rarest conditions seen globally. To date there have been 89 individual CfRD studies conducted or still recruiting across 15 specialities, aligned to the Birmingham Health Partners (BHP) Pillars. The detailed phenotyping of longitudinal cohorts, proving an excellent platform for NIHR portfolio adopted experimental medicine studies.
Industry engagement is a part of the core business of this unit with invites for preferred industry partnerships and has attracted successful grants totalling £2.3m since the unit opened, which has significantly influenced the success of the business case approved by the Executive Board for recurrent funding.
|University Hospitals Birmingham|