Providing Education and Tools to Share
Genetic Information with Family Members
Genetic Information with Family Members
Useful Website Links
- Bowel cancer surveillance guidelines from West Midland's Regional Genetics Service. www.bwnft.nhs.uk/healthcare-professional/clinical-genetics-service/cancer-surveillance-guidelines
- and their webpage for information leaflets: www.bwnft.nhs.uk/patients-visitors/information-and-leaflets
- Bowel Cancer UK provide information about how family history can affect risk www.bowelcanceruk.org.uk/about-bowel-cancer/risk-factors/family-history/
- also at Guy’s hospital www.guysandstthomas.nhs.uk/our-services/genetics/patients/patient-leaflets.aspx
- and Guy’s cancer genetics risk assessment for health professionals via www.ubqo.com/cancergenetics
- National Institute for Health and Care Excellence (NICE) information about testing for Lynch syndrome www.nice.org.uk/news/article/nice-recommends-wider-use-of-tests-to-detect-cancer-causing-genetic-condition
- The Cancer Prevention Project 3 (CaPP3) website for participation in their research but also advice about aspirin and cancer risk reduction www.capp3.org
- The International Society for Gastrointestinal Hereditary Tumours (InSiGHT) have created a website with information about genetic syndromes which can cause bowel cancer and other gastrointestinal cancers. Most information is written for health professionals in clear but sometimes technical language www.insight-group.org/
- Macmillan has some good advice about the significance of family history of bowel cancer http://www.macmillan.org.uk/information-and-support/diagnosing/causes-and-risk-factors/genetic-testing-and-counselling/inherited-cancers-bowel-cancer.html and being referred to a genetics team www.macmillan.org.uk/information-and-support/diagnosing/causes-and-risk-factors/genetic-testing-and-counselling/genetics-specialist.html
- Prospective Lynch syndrome database has cancer and age specific risks for different genes in Lynch syndrome.
This is useful for both patients who want more detailed information about cancer risks and health professionals. www.lscarisk.org
- Lynch syndrome UK (LSUK) support group provides support for people with Lynch syndrome and has gathered many academic articles as pdfs available about Lynch syndrome www.lynch-syndrome-uk.org/learning
- Institute of Cancer Research information for professionals’ webpage, includes protocols for investigation or referral. www.icr.ac.uk
- For talking to children section RipRap is a website developed for teenagers who have a parent with cancer. Teenagers can learn more about cancer and its treatment and through real stories they can read the experiences of other young people and share their own stories. www.riprap.org.uk/about/