For Reseachers
The Fanconi Anemia Registry collects patient-reported natural history data about individuals with Fanconi anemia, with the goal of improving the understanding of Fanconi anemia and informing treatment development. Registry questionnaires were built from common data element standards and cover the following topics:
- Socio-demographics
- Medical history
- Cancer screening
- Cancer diagnoses and treatment
- Quality of life
- Clinical trial participation
We are interested in sharing the data that individuals with FA have provided to our registry with you! If you would like access to the Fanconi Anemia Registry data for a research project, please contact our registry administrator at registrymanager@fanconi.org for more information. Access to the Fanconi Anemia Registry data is contingent upon project approval by the Fanconi Anemia Registry Advisory Board.