The group actively manages it’s research portfolio through regular progress review, identification of barriers to recruitment and actions to break these down.
They undertake tasks such as:
- Providing help and guidance for studies to get onto the Genetics portfolio
- Monitoring the performance of studies to ensure they are getting the right level of CLRN support
- Encourages patient and public involvement into decision making and management of studies
- Links into other Genetics national networks
- Works with Life-sciences Industry
- Raising the profile of Genetics Research.
“ For patients and families affected by genetic diseases the coordinating role of the NIHR Genetics Speciality Group is important. Having the opportunity to feed in their perspectives, and to make links between the research teams and relevant patient support groups known to Genetic Alliance UK helps ensure that the topics addressed are important to those directly affected, and that best use can be made of scarce resources”
Alastair Kent OBE, Director, Genetic Alliance UK
“The Specialty Groups offers us, for the first time, a national approach to coordinating research in an ethically and practically challenging environment, offering great opportunities for clinicians to contribute to research at many levels. It offers the means of joining up the community, succeeding and measuring our success and ensuring that resources are available to support this important emerging area of research.”
Professor Tim Walsh, Chair, NIHR Critical Care Specialty Group
