Joint bid for Yorkshire and Humber to participate in a Department of Health programme called 100,000 Genome Programme, being run by a company called Genomics England Limited. We are looking to arrange a consultation meeting around this project, so we can obtain patients, public feeling around the projects aims, and our proposed ideas on meeting these aims.
The remit of the programme is to build on prior work performed in a cancer setting (around genomic testing and feedback of results to inform patient care and management) to evaluate a similar approach for patients with a rare disease and their families and patients with cancer. The way in which the NHS is able to link a whole lifetime of medical records with a person’s genome data and the fact it can do this on a large scale is unique. The richness of this data can help to understand disease and to tease apart the complex relationship between our genes, what happens to us in our lives and illness. The programme will bring the predicted benefits of genomics to NHS patients via four main aims are;
- to create an ethical and transparent programme based on consent;
- to bring benefit to patients and set up a genomic medicine service for the NHS;
- to enable new scientific discovery and medical insights; and
- to kick start the development of a UK genomics industry.
For further information on this project please read the attached information sheet we have put together or go to the dedicated webpage for the project http://www.genomicsengland.co.uk/the-100000-genomes-project/
The cancers the project is looking at are Ovary, prostate, lung, breast and colorectal, the genetic diseases to be investigated are numerous and the headings include: Cardiac, neurological and neurodevelopment disorders, ophthalmological, dermatology, endocrine, growth disorders, white and red cell haematology disorders, metabolic disorders, hearing disorders, renal and urinary disorders, rheumatology and connective tissue, tumour predisposition syndromes.
Part of our bid will be to develop and implement a three year programme of activity around Patient and Public Involvement. This process starts with this email, inviting you or interested colleagues to our first consultation meeting which will be held on the 12th March 2015.
We will arrange the meetings timings and venue (either Leeds/Sheffield or both) around the responses we receive to this communication, so if you are interested in coming along and finding out more, please let me know your availability in the 12th March and whether you prefer a Leeds or Sheffield venue. I will then get in touch in a few weeks to confirm the arrangements, but in the meantime I would be grateful if you could keep the day free in your diary.
I look forward to hearing from you.
Clinical Research Administrator