The Lynch syndrome registry pilot study led by The Cancer Screening and Prevention Research Group at Imperial College London, records information about the health status of individuals with Lynch syndrome. A select group of Lynch syndrome patients who have previously taken part in the Cancer Prevention Project 3 (CaPP3) trial will be invited to participate in the pilot study from across four hospitals in England.
The Lynch syndrome registry records and analyses important information about people with Lynch syndrome. This helps to understand how people with Lynch syndrome are looked after and cared for across England. All information is held on a secure and confidential computer database.
The registry will ultimately be an efficient system that with the help of the bowel cancer screening programme will allow nationally coordinated care for Lynch syndrome families. It will also become a valuable central research resource that could be used to support other studies.
Lynch Syndrome Ireland 