Based on the experiences with the Belgian Polyposis Project, FAPA is expanding its activities toward Lynch Syndrome (LS) or Hereditary non-polyposis Colorectal Cancer (HNPCC) families.
It concernes a twofold project consisting on:
1) starting up a national register for Lynch Syndrome families with two primary functions:
- to increase the understanding of LS by creating and maintaining a research resource for fundamental, clinical and epidemiological scientific research and consequently to improve research capabilities by centralizing data
- to serve as an educational resource for participants, their physicians and other health care providers
2) creating a biobank for persons with a suspicion of Lynch Syndrome but with a negative genetic testing
This project has been agreed by the Ehical Committees of the university hospitals.
First of all the different national genetic centers (mostly academic) will be contacted to identify patients for whom a request for genetic testing for Lynch syndrome diagnosis has been prescribed, regardless the result at this genetic test (positive or negative). It is from this listing of patients that the referring physicians prescribers will be identified. Those prescribers will be asked to present the consent form to their patients to obtain their agreement to participate in the register and/or the biobank. If the prescriber cannot be contacted or is unavailable for any reason, the medical geneticist and/or nurse in genetic counseling of his department may contact the patient directly to give clear information on the various aspects of clinical research protocol and to offer to sign consent(s).
You will find all documents concerning the project in the rubrique “Documents” (under construction).
Could we ask you to inform your Lynch patients about the existence of the FAPA? Thank you for your collaboration!
You can download an overview of the project here (NL) - (FR) as well as the informed consent forms for the registry (NL) - (FR) and for the biobank (NL) - (FR).
