Confidentiality

Node Map
  • How is the information I give you kept confidential?
  • Personal data
  • Biological samples and genetic data

Useful links for more information about use of personal and biological data

Data Protection Act (2018)

The Data Protection Act (2018) is a UK law which was put in place to ensure the protection of people's data privacy. It also gives people the rights to access any information held about them, have it erased and object to its processing.

Human Tissue Act 2004

If you provide the EDGI UK Study team with a saliva sample, your biological sample is protected by the Human Tissue Act 2004. The Act regulates the removal, storage and use of human tissue and ensures all samples are collected appropriately.

  • What is UK Longitudinal Linkage Collaboration (UK LLC)?
  • How does this work?
  • Linked data owners
  • Where and how is EDGI UK data stored at UK LLC?
  • Can I find out if EDGI UK data held in the UK LLC Trusted Research environment has been approved for a research project?
LLC Logo

UK Longitudinal Linkage Collaboration (UK LLC)

A new way of working with longitudinal data is by combining data from many Longitudinal Population Studies to allow researchers to look at more people across diverse population groups, occupations and other factors to improve health and wellbeing and service provision. To do this, many studies need to put relevant data into a highly secure computing environment, known as either a Trusted Research Environment (TRE) or a Safe Data Haven (SDH) or a Secure Data Environment (SDE).

The EDGI UK Study is a partner with UK Longitudinal Linkage Collaboration (UK LLC), a Trusted Research Environment set up to bring data together for research in the public good.

Am I Eligible?

To take part in the Eating Disorders Genetics Initiative, part of the NIHR BioResource, you must:

  • Have experienced, or have been diagnosed with an eating disorder
  • Be aged 16 and above
  • Live in England

Sign up TO EDGI UK, part of the NIHR BioResource

Developed in collaboration with Beat, the UK’s eating disorder charity, and with patients and service users.

If you are younger than 16 and interested in taking part, please contact the EDGI UK team at edgi@kcl.ac.uk.

You can withdraw from the study at any time.

Already have an account? Login or Recover Password

The EDGI UK enrolment process consists of four steps:

  • Reading the Information Sheet
  • Providing consent
  • Completing our questionnaire
  • Providing a saliva sample
Talk to us

Please be aware that phone calls go straight to voicemail. We recommend emailing for a faster response.

Our Office hours are:
Monday to Friday 9:00am to 5:00pm

Please note that we will not be able to call you back if the number provided is not a UK based telephone number

Need any help?