Frequently Asked Questions

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How will participants’ samples and data be kept secure and private?

We take sample and data security, and patients’ privacy, very seriously. All samples and data will be kept secure according to the UK’s and international highest standards, overseen by ethical review. All institutions contributing to this project have adopted these standards and use them routinely, and comply with the Human Tissue Act 2004 and all other relevant regulations and legislation, including the General Data Protection Regulation (GDPR).

The University of Edinburgh has extensive experience in doing research that requires recruitment of a large number of people, and always ensures the highest level of privacy for participants and full compliance with ethical standards and legislation.

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The largest ever DNA study of ME/CFS

A partnership between

Action for ME logo
Forward ME Logo
UKRI MRC Human Genetics Unit logo
National Institute for health research