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.
Why have a Lynch syndrome registry?
The registry will collect information from people with Lynch syndrome and help to better understand how these people are currently being monitored and managed.
The registry will ultimately be an efficient system that with the help of the bowel cancer screening programme will allow nationally coordinated care for you and others with Lynch syndrome.
It will also become a valuable central research resource that could be used to support other studies.
Lynch Syndrome Ireland 