UK ME/CFS Biobank

biobank-group-photoThe CURE-ME research team at the London School of Hygiene & Tropical Medicine, and funders Action for M.E., the ME Association, ME Research UK, and a private donor, are delighted to announce the release of the Summary Report on the Establishment Phase of the UK ME/CFS Biobank (2011-2014) (read the report).
UK ME/CFS Biobank has been developed as a research resource for scientists at the London School of Hygiene & Tropical Medicine and for the international community of researchers interested in conducting ethical and progressive research on ME/CFS.
The pilot funding from the three charities and the private donor has enabled the Biobank to become established, and has led directly to a successful application for a £1 million research grant from the U.S. National Institutes of Health, which will fund the project through to mid-2016.
As of November 2014, the Biobank held approximately 16,000 samples from over 350 participants (funded by all sources). Our hope is that these samples will contribute significantly to improved diagnosis and treatment for the many people around the world with ME/CFS. It should be ready to consider applications from researchers worldwide seeking to utilise its samples and data, subject to available funding, in 2015.
Feedback from people with ME/CFS, enrolled participants, their families, and fellow researchers has been universally positive throughout the course of the project. We would like to express our sincerest appreciation to the many people – both those with and without ME/CFS – who have so generously contributed to the Biobank by donating their time, resources, and precious energy to participate in the project.
The UK ME/CFS Biobank is a valuable resource, but long-term sustainability will be dependent on securing continuous financial support for this vital infrastructure to allow it to reach its full potential. This will involve the expansion of participant recruitment with long-term follow-up, and the processing and analysis of samples and data to test a range of study hypotheses, as well as the ongoing sharing of samples and data with the research community.
To learn more about the project, including how to participate and how you can help ensure the sustainability of the UK ME/CFS Biobank, please visit CURE-ME ME/CFS.
Quote from charity funders
“The Biobank is a much-needed resource, adding capacity and creating value for the research community and ultimately for people with M.E. Working collaboratively, we will increase efficiency and effectiveness which is critical if we are to achieve our vision of a world without M.E.” Sonya Chowdhury, Chief Executive, Action for M.E.
“ME Research UK is delighted to see the Biobank established, and is proud to have been one of the co-funders. The whole CURE-ME research team deserve congratulations on this achievement. The UK now has a unique ME/CFS research resource linking bio-specimens with clinical data, and we look forward to seeing it made available to scientific researchers across the world.” Dr. Neil Abbot, Research & Operations Director, ME Research UK
“The ME Association is delighted to have been involved in planning, developing and co-funding the UK ME/CFS Biobank. This is a vital new piece of research infrastructure that has achieved all it set out to do in the first years of operation. Special thanks must go to everyone who has donated blood samples and to our highly dedicated staff at the London School of Hygiene and Tropical Medicine and the University College London / Royal Free Hospital BioBank. We now look forward to expanding patient recruitment and opening up the biobank in 2015 to researchers who want to make use of the blood samples.” Dr. Charles Shepherd, Hon Medical Adviser, ME Association

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