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 aforementioned survey is after the blog post if you can't stand the thought of reading this intro..... I somehow think that 'data' will be a significant feature of my life over the next few weeks. Next week I am a panellist at the NIHR/ABPI conference '360 of Health Data: Harnessing Big Data for Better … Continue reading Swipe here to donate…Tissue donation for research: what’s your view? Blog and survey.
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…..
The UK Academy of Medical Sciences (AMS) does not do hyperbole. This is a good thing considering the histrionics that usually accompanies discussion about stratified medicine. AMS brought out its long-awaited report on stratified medicine on Friday entitled 'Realising the potential of stratified medicine.' It's straight-laced approach to the subject matter means it failed to … Continue reading It’s a personal thing: You say stratified medicine and I say…