About us

In a major national initiative, it’s our mission to harness the strength of the NHS as a whole and to make maximum use of the NIHR’s comprehensive resources to support research programmes in a wide range of such rare diseases – and in work ranging from patient identification and cohort building to ‘deep pheno-typing’. We’re doing that by bringing together diverse centres of excellence with the facilities and expertise to lead programmes of research into rare diseases. Broadly speaking, the RD-TRC’s aim is to translate the outcomes of that research into the development of new, more effective therapies and real-life patient benefits. More specifically, our high-level aims are to:

  • Harness and further develop the existing NHS research infrastructure to support patient-centred research into rare diseases.
  • Facilitate tangible, rapid and efficient collaboration between NIHR-funded research infrastructure, clinical researchers, NHS organisations, other research funders and life science companies.
  • Increase the volume of in depth pheno-typing and link this to data on genomic abnormalities to provide greater understanding of the mechanisms underlying rare diseases.
  • Promote and enhance the nation’s reputation as a world-class centre for translational research.

RD-TRC’s Executive

 

John Bradley-VA Retouch

Professor John Bradley
Co-Chair RD-TRC
NIHR Cambridge Biomedical Research Centre

Patrick Chinnery-VA Retouch

Professor Patrick Chinnery
Co-Chair RD-TRC
NIHR Cambridge Biomedical Research Centre

Dr Roger James
RD-TRC IT Director
NIHR Cambridge Biomedical Research Centre

Marijcke Veltman-VA Retouch

Dr Marijcke Veltman
RD-TRC Operational Director
NIHR Cambridge Biomedical Research Centre


RD-TRC’s Management

The Strategic Oversight Group

Supported and informed by various committees and working groups the SOG’s role is to oversee our strategic direction and governance to ensure we meet our specified objectives. That involves helping to establish the fundamental values and ethical principles that guide us as well as keeping a watchful eye on the health and wellbeing of our volunteers.

Membership of the Strategic Oversight Group

Association of Medical Research Charities
Industry Representative
Informatics Director
International Representative
NIHR BioResource Rare Disease Lead
NIHR Training School Representative
NOCRI Representative
Operational Director
Rare Disease UK representative
RD-TRC Co-Chair, Cambridge
RD-TRC Co-Chair, Cambridge
Representative from Partner Organisations

The Executive

As the name suggests, the Executive, comprising the Co-Chairs and the IT and Operational Directors, is responsible for the hands-on management of the RD-TRC, reporting directly to the SOG.