Dear colleagues!
The Fanconi Anemia Registry collaborates extensively with the German Fanconi support organization “Deutsche Fanconi Hilfe e.V.” (Chairman: Christine Krieg). Our goal with the Registry is to learn more from, for, and about people suffering from Fanconi Anemia (FA). One of the ways we address this goal is by collecting medical information once a year from registered people who have FA. In addition, we offer diagnostics and consultations which are financed based on reference fees, and we also collect blood, bone marrow, and tissue samples for FA research. The Registry is sponsored by the German Childhood Cancer Foundation.
About the Fanconi Anemia Registry
Registering Patients
Prerequisites for Registration
Only people with a confirmed FA diagnosis are included in the Registry. The laboratory of Dr. Kalb in Würzburg is available for the FA diagnosis:
Registration in the FA Registry
We are pleased that you want to register your patients in the Fanconi Anemia Registry. You can find all of the Registry documents needed for this on our website as downloadable PDFs. If you have any questions about the registration, please contact our co-workers Beatrice Hoffmann and Birte Sänger from our documentation team directly.
We recommend that your local ethics committee review the registry protocol.
Consultation and reference diagnostics
Consultation for patients and their treatment teams
An important component of our work is providing people with FA and their treatment teams with individual consultations. We specifically urge you to contact us if malignant diseases arise, as standardized therapy regimens are often too toxic for people with FA. It may also be expedient to genetically characterize the tumor.
For consultation, official statements, or treatment recommendations, please contact our Registry Manager Prof. Christian Kratz directly. To obtain a better assessment, it is helpful if you also send us reports from physicians and X-ray images.
In addition, Dr. Eunike Velleuer will be available in an advisory capacity.
Reference diagnostics for FA patients
Regular blood and bone marrow tests are indicated due to the increased risk of developing bone marrow failure and myeloid neoplasia. In Germany, we offer reference diagnostics in this regard. You can find the submission forms for cytogenic tests, morphological, and hematopathological diagnostics in this section.
The experts of our Fanconi Anemia Registry
Our FA Registry is in close contact with experts from many different disciplines. This allows us to offer consultations, that are as extensive and competent as possible, to those suffering from FA, their families, and even specialist colleagues. If you have a specific question or a specific request relating to a specialist medical field, you can contact the corresponding expert directly.
