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Purpose

FAPA aims at preventing cancer and at enhancing quality of life by 1) providing information about polyposis to patients and relatives, 2) supporting physicians to trace families and to guarantee regular screening and follow-up for their patients, 3) participating in research on the basis of a register and 4) stimulating informal contacts between patients creating an opportunity to exchange experiences and to enhance social support.

FAPA manages a register aimed at including all Belgian FAP-patients anonymously. For registration, a written consent has to be obtained from each patient. On a daily basis, FAPA co-workers collect their medical data related to FAP in the different centres where they are or have been treated after consent has been obtained. This register provides a basis to participate in national as well as international clinical, epidemiological and fundamental research.

FAPA also wants to help you to trace and inform FAP-patients, to ensure early detection and regular follow-up and to provide support to patients and their relatives. At the same time, we ask your help to publicize the FAPA and to register patients.

Only with the help of all professionals involved in the treatment and follow-up of FAP-patients our organization can manage the register and its activities most successfully.

 

Procedure

New patients: If you treat FAP-patients that have not been registered yet, we would kindly ask you to contact us.

Written informed consent is required before registration can take place. You can download the consent form necessary to obtain written consent. You can send us (by mail or fax) one copy of the consent form. Furthermore, to inform patients or at-risk-relatives about FAP, you can download a patient brochure and a leaflet with information about the FAPA or refer patients to our website www.belgianfapa.be for more information.

Registered patients: Once a patient is registered, it is important to keep the register up-to-date. You can use this result form resultform (fr) or resultform (nl) and send us the completed form (mail or fax).

A working document describing the procedure to register more extensively can be downloaded here.