Welcome!
The Fanconi Anemia Registry is an online registry for people with Fanconi anemia. It is sponsored by the Fanconi Anemia Research Fund and hosted by the National Organization for Rare Disorders (NORD®) on their IAMRARE® platform. This registry will collect information from participants (or their authorized representatives) who are affected by Fanconi anemia.
What is a Patient Registry?
A patient registry is a collection of standardized information about a group of patients who share a condition. The information may be used for a variety of purposes such as conducting natural history studies and supporting disease-specific clinical trial recruitment. The Fanconi Anemia Registry serves to:
- Describe the people who have Fanconi anemia and to better understand the variability and stages of Fanconi anemia;
- Understand how Fanconi anemia changes over a person’s lifetime;
- Learn about clinical practice patterns and variations over the course of treatment;
- Help to develop best practices, management guidelines, and recommendations so that clinicians can know how to give the best care to improve the quality of life and outcomes of people with Fanconi anemia; and
- Identify people with Fanconi anemia who might be willing to take part in other research studies or clinical trials. You will be able to choose whether you want to hear about these other studies.
- Support the design of clinical trials that explore new rare disease treatments.
What types of data will be collected in the Fanconi Anemia Registry?
The Fanconi Anemia Registry collects data on the following topics:
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- Socio-demographics
- Medical history
- Cancer screening
- Cancer diagnoses and treatments
- Quality of life
Is the data secure?
The Fanconi Anemia Registry follows strict government guidelines to assure patient information is protected. The platform is served over HTTPS, which means that the data is encrypted when being sent from the user’s browser to the NORD servers. The data is also kept encrypted in the NORD database (data at rest). Communications between the registry platform application server and the database are also encrypted. As with any information one provides electronically, there is a very rare chance that privacy could be compromised. However, the registry and the security measures minimize the chance of this occurring.
Who can join the study?
Individuals of any age with a confirmed diagnosis of Fanconi anemia (FA) or diagnosis consistent with FA are eligible for inclusion.
Is there a cost to participate?
There is no cost to participants of the registry. Initial design and implementation of the registry will be funded by the Fanconi Anemia Research Fund and NORD.