Patient Registry

What is the Fanconi Anemia Registry?

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.

Who runs the registry?

FARF is launching 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 his/her own data.

Does it cost?

Participation in the Fanconi Anemia Registry is free and voluntary, and participants may withdraw at any time.

What about privacy?

The Fanconi Anemia Research Fund will ensure that data privacy and confidentiality are strictly maintained. Only authorized personnel at FARF will have access to the individual data. If data is requested for research purposes, it will always be provided in a de-identified manner. The data is made anonymous and stored securely in an online portal.

Who is the registry for?

Any patient with a diagnosis of Fanconi anemia may join this registry.

If I’m interested, what should I do?

Contact Suzanne Planck, FARF Family Services Coordinator, at 1-541-687-4658 or .(JavaScript must be enabled to view this email address). Suzanne will work with you to set up your profile and enter your information. Thank you for playing an important role in advancing treatments!