The safety and protection of the UK population’s personal information or data is enshrined in UK law. As such, the Cancer Screening and Prevention Research Group (CSPRG) at Imperial College London is governed by all relevant UK legislation on keeping personal data safe. The CSPRG also adheres to all Imperial policies and best practice on information security and data protection, and implements additional group policies for the safe use and storage of all patient and public health data gathered for our cancer research studies.

See our general Data Protection and Privacy Notice.

Privacy and data protection information about the Lynch Syndrome Research Registry

Our dedicated Lynch Syndrome Pilot Registry website also contains information about our database study for participants and the wider public.

What data does the CSPRG hold for the Lynch Syndrome database?

The CSPRG holds the following personal information as required for the database:

  • Personal information – name, date of birth, NHS number, contact details, details of GP, hospital and genetic centre.
  • Medical information – Lynch Syndrome-related medical history, genetic information.
  • Test results – colonoscopy details including dates and results.
  • Cancer diagnoses.
  • Questionnaire answers.

All data is encrypted and held on secure servers at Imperial College London. It will not be possible to identify individuals from the published results of this study.

Why do we need to hold identifiable data?

We would like to know if our database members are diagnosed with cancer in the future. To collect this data from NHS systems, we have to provide NHS England with a date of birth and an NHS number.

All data we collect is kept strictly confidential and in accordance with the General Data Protection Regulation (GDPR) and Data Protection laws.

What approvals has the database received?

Several national experts approved the plan before we received funding. Our sponsor, Imperial College London, reviewed the study.

All research in the NHS is monitored by the Health Research Authority (HRA). It is reviewed by an independent group of people from an NHS Research Ethics Committee. These committees protect the safety, rights, well-being and dignity of research participants. Our research plan was checked and approved by an NHS Research Ethics Committee.

How long will we hold this data?

We have funding for the study until 2028. Imperial College London sponsors this study. They require that we hold all data from clinical studies for 10 years after the end of the study. This means that we currently plan to hold all of this registry data until 2038.