PROTECT-C_v1.0

• Research type

  Research Study

• Full title

  Protect-C: Population Based Germline Testing for Early Detection and Prevention of Cancer

• IRAS ID

  328404

• Contact name

  Ranjit Manchanda

• Contact email

  r.manchanda@qmul.ac.uk

• Sponsor organisation

  Queen Mary University of London

• Duration of Study in the UK

  8 years, 0 months, 1 days

• Research summary

  Currently, genetic-testing for cancer genes is only available on the NHS to people who meet certain strict criteria based on family-history. This criteria-based testing misses 50%-to-80% of people with a genetic change or fault. These cancers are potentially preventable. However, only around 3-in-100 people who have a genetic change (fault) that increases their cancer risk know about it.

  PROTECT-C is offering genetic-testing to (all) people to see whether they carry a genetic fault and have an increased risk of breast, ovary, bowel, and/or womb cancer. This is regardless of whether they or their families have had cancer. Individuals at increased risk of breast, ovarian, womb, and bowel cancer, through the NHS will have the option to:
  a)find cancers early, when they are easier to treat
  b)prevent cancers from developing

  PROTECT-C is a digitally enabled study. Participants can register their interest online and download the study app if invited. On the app they can consent to the study, read information and watch videos about genetic-testing, and decide about having genetic-testing. They can consent to genetic-testing through the app, and complete study questionnaires. Throughout the study participants can access counselling support through a dedicated helpline, email, or booking a virtual appointment for one of the specially trained study counsellors

  PROTECT-C will look at how many people decide to have genetic-testing and the number found to have a genetic change/fault. It will evaluate their experience with the app, the testing pathway, and how this approach to genetic-testing affects their quality-of-life, satisfaction, and psychological well-being. PROTECT-C will assess how people at increased risk decide to manage their risk through screening and prevention. It will also assess if this is affordable for the NHS. This will give us a better understanding of this new approach of offering genetic-testing to people across the population.

• REC name

  North West - Preston Research Ethics Committee

• REC reference

  24/NW/0294

• Date of REC Opinion

  3 Oct 2024

• REC opinion

  Favourable Opinion