We are a dedicated group of individuals responsible for assisting patients with rare diseases and their family members through the process of informed consent for the 100,000 Genomes Project.
We receive referrals from 18 different departments across the region, and since starting in June 2016, have consented 500 individuals via weekly clinics (as of March 2017).
Our team members have a genetic counselling or clinical nurse background, with expertise in enabling patients to make an informed decision about genomic testing and considering the impact that this may have on family members.
We coordinate five regular multidisciplinary team meetings each month, as well as ad-hoc meetings with individual departments to discuss patients who may benefit from and be interested in the Project.
We are also involved in education and training of staff in various specialty areas, to support mainstreaming genomic medicine into standard clinical practice.