Many patients have agreed to participate in the Fanconi Anemia Registry FAR01 because of the Fanconi anemia they have been diagnosed with. We would like to inform you that our administrative structures will change slightly from 2020.
What will change?
Our Cancer Predisposition Syndrome Registry includes patients with all known cancer predisposition syndromes (CPS), i.e. genetic diseases with an increased risk of cancer. As Fanconi anaemia also belongs to these CPS, the Fanconi anaemia registry will be added to the comprehensive CPS registry as of this year. Thus, as of January 1, 2020 the Fanconi Anemia Registry will be a sub-registry of the CPS Registry and part of the data recorded in the Fanconi Anemia Registry will be transferred to the CPS Registry. Only the superior name of the Fanconi Anemia Registry will be changed to avoid extensive bureaucratic challenges for both the patients and us in our future projects.
What remains the same?
Not much will change for those affected, as this is an administrative change. The rights and declarations of consent of registered patients will remain unchanged. Furthermore, the scope and frequency of data collection in the Fanconi Anemia Registry will not change. As the Fanconi Anemia Registry and the CPS Registry are subject to identical management and administrative structures, there will be no changes in the access to or processing of your data or your contact persons.
If there is anything unclear to you, you are welcome to contact our registry team at any time. Further information on our registers can be found on our register pages.