I once told a conference that it was my perception that rare disease communities were in a stronger position to put research at the top of the agenda; that patients, carers, clinicians and researchers found it easier to get around the table in these areas, were able to work more closely together and mobilise for … Continue reading Understanding why people with rare diseases lose out on research may help those with other more common conditions @rarediseaseday
It is one of the boldest and most exciting initiatives in UK health research and care that I have witnessed. It's also happening at lightning speed. In the eighteen months since the Prime Minister announced the 100,000 Genomes Project to coincide with the NHS's 65th birthday in 2013, we have gone from almost a standing start … Continue reading Patient charter on genome sequencing is a call to arms to the NHS, charities and researchers
The Nuffield Council on Bioethics have today published their report: 'The collection, linking and use of data in biomedical research and health care: ethical issues' following months of inquiry by an expert working group Chaired by Professor Martin Richards. Here's a copy of the actual report. There is much coverage in the media already including the … Continue reading Nuffield report underlines importance of public participation if people are to trust how their medical records are used for research
The BBC is this morning running a story on its online health pages about the launch of the UK Personal Genome Project - a UK subsidiary of a US initiative - and its 'hunt' for 100,000 volunteers to share their DNA to help fight disease. Like others, I am not sure I feel totally comfortable about … Continue reading The competition/chugging/hunt/fight [delete as inappropriate] for your DNA has only just begun…..
Passing this invite on from Sir John Chisholm, Chair of Genomics England, for their event on 3rd Oct. Email address to attend included below along with website address. Hello, I am writing on behalf of Genomics England to invite you to our first Stakeholder Event on Thursday 3rd October 2013. The venue is as follows: … Continue reading Genomics England is inviting patients and the public to a town hall event: apply here