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RDF19 Poster Details

RDF19 Poster Detail

Poster Title 
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 has developed a radical new approach to care delivery , which has drastically improved patient experience; providing comprehensive assessment and improved outcomes for patients with rare diseases. The focus is fo highly organised one -stop clinics where patents (with their carers) undergo pre-planned diagnostic tests and see all relevant specialists and the multi-disciplinary team at one visit as UHB, the hub of their care. Patient charities regularly use the dedicated resource room to facilitate the one stop model and has an opportunity to meet and support its’ members. Local care is then facilitated between visits by the disease specific care plans, Myhealth@QEHB, and remote Consultations.

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.

  • Gray, Joanna Clincal Manager NIHR/WTCRF, UHBFT
  • Plumb, Joanne Deputy Director RD&I UHBFT
  • McGlynn, Fiona Senior Manager RD&I, UHBFT
  • Hull, Diana Lead Research Nurse R&D, UHBFT
University Hospitals Birmingham