The FARA patient registry is the only worldwide registry of Friedreich’s ataxia patients. This registry currently holds the demographic and clinical information on more than 1,800 Friedreich’s ataxia patients from across the United States and internationally. This registry was created to serve the patient, physician, and research communities.
For the Patient Community
Participation in the FARA patient registry ensures that patients are informed about opportunities to participate in clinical research studies and kept up-to-date on the progress of clinical trials.
For the Physician
The homepage of the FARA patient registry website, www.curefa.org/registry, is a place that you can go to find an up-to-date listing of ongoing clinical trials for FA. You can refer your FA patients to the patient registry so that he/she can consider registering. FARA can provide you with registry brochures that you can give your patients to assist with the referral process.
For the Researcher
The FARA patient registry is a patient recruitment and communications tool for both academic and industry sponsored clinical research studies and trials. The registry coordinator can perform queries based on the inclusion/ exclusion criteria of a study and send patients information about a study for which they qualify. Patients can be contacted by the registry coordinator via e-mail, mail, or by telephone. Informational postings can also be added to the registry homepage as well as the FARA website and in the FARA newsletter. FARA is committed to assisting researchers with study recruitment and participation.
To request a communication or query via the FARA patient registry, please complete the registry request form in the right hand column. Registry requests and additional questions can be sent to the FARA patient registry coordinator at FARA_Patient_Registry@curefa.org.
Some of its Key Uses
- Opportunities to communicate with the patient community over time, while maintaining patient confidentiality
- Enhanced patient recruitment through targeted recruitment notices to patients who best match the key inclusion/exclusion criteria for clinical research studies and trials
- Pre-study planning - Information on the size of the FA patient population based on demographic features (e.g., age or geographic area) or clinical features (e.g. ambulation status).