The Fanconi anemia patient registry is a patient-facing, longitudinal study. This is what this page addresses. Parents/guardians will consent for their minor and fill out the questionnaires.
Separate from the patient registry is the opportunity to register for our family and patient education and support services. Registering with FARF gives patients and their families access to educational materials, resources, support services, and community. Registration for these services is located here.
The Fanconi Anemia Registry is a natural history study that consists of electronic surveys to collect information about the patient experience and disease progression. It is a versatile online system that securely collects and stores data for medical research. Patients, or their caregivers or guardians, can enter information from anywhere in the world. Registry participants can complete surveys about their own disease experiences in addition to learning about other participants’ experiences by viewing anonymized aggregated survey data.
The Fanconi Anemia Registry is a powerful opportunity for individuals with FA and their family members to contribute directly to research that will enhance our understanding of the disease, thus facilitating the development of new diagnostic and treatment options. Participation is especially vital given the rarity of FA – every patient experience is a unique and invaluable part of the natural history of FA.
FARF runs the registry in collaboration with the National Organization for Rare Disorders (NORD), an independent charity that built its natural history study platform as part of its mission to help identify and treat 7,000 rare diseases. FARF is a member of NORD and the organizations work together to eliminate the challenges that rare disease patients face. FARF is the custodian of the registry and the data contained in the registry and will be your main point of contact throughout your participation in the registry study. Each patient is the sole owner of their own data.
Participation in the Fanconi Anemia Registry is free and voluntary, and participants may withdraw at any time.
The registry follows strict government guidelines to assure patient information is protected. As with any information you provide electronically, there is a very rare chance that your privacy could be compromised. However, the registry and the security measures minimize the chance of this occurring. All data, including those with Protected Health Information, will be stored in a password protected secure server. The Fanconi Anemia Registry Advisory Board will evaluate all requests for data from researchers. Researchers will only be provided with the minimum data necessary to accomplish their research study goals. The researchers will be required to sign a Confidentiality Agreement in which they promise to keep your information safe.
Any patient with a diagnosis of Fanconi anemia may join this registry.
Need some help? Contact Andrea Ronan, FARF Advocacy and Engagement Manager, at 1-541-687-4658 or firstname.lastname@example.org. Andrea will provide you with a step-by-step guide on setting up your profile and entering your information. Thank you for playing an important role in advancing treatments!