Alopecia Areata Registry, Biobank & Clinical Trials Network
The Alopecia Areata Registry, Biobank & Clinical Trials Network (Registry) is an organized network of centers that identify and register patients with alopecia areata. Relevant research samples are collected and information is catalogued and stored in a central repository. The Registry is a powerful resource of clinical data available to investigators studying the disease and pharmaceuticals developing treatments. The Registry does not offer treatment for alopecia areata. However, in collecting data about the genetic and environmental factors that predispose for alopecia areata, we hope to develop effective treatments and a cure.
We are currently working to transition the Registry data and associated samples to a new state-of-the-art informatics platform and next generation biorepository. In order to facilitate the transition, we have temporarily halted patient participation in the Registry and the collection and shipment of new samples. We hope to update the community about the timline for when the post-transition Registry is expected to be up-and-running by the end of the year.
IMPORTANCE OF THE REGISTRY
The Alopecia Areata Registry, Biobank & Clinical Trials Network is the largest collection of alopecia areata data and DNA samples in the world. NAAF serves as the trusted custodian of this centralized database and store of well-characterized samples, available to investigators studying the disease and pharmaceutical companies developing treatments. The Registry is designed to answer epidemiological questions and provides information for investigators to find effective treatments. The Registry is an instant network for clinical studies, easily alerting and enrolling patients in clinical trials.
This powerful resource provides an instant network to alert and recruit patients for clinical trials. We are committed to continue its management and funding so we can easily link clinical-trial–ready sites to the patient community, facilitating study enrollment and feedback.
A close relationship with the patient community allows us to easily promote patient involvement in research studies and clinical trials vital to bringing safe and effective treatments to market. We are able to quickly fill studies through many outreach avenues, including: social media; website; mail and email to our database; and the Registry.
REGISTRY HISTORY & LONGEVITY PLANNING
The Registry began with Dr. Madeleine Duvic and Dr. Maria Hordinsky collecting DNA from patients in 1987. NAAF then provided a $25,000 grant to Dr. Duvic and Dr. Angela Christiano over 15 years ago to create a DNA database. This spurred these three investigators along with Dr. David Norris and Dr. Vera Price -- five experienced hair disease investigators representing the major geographic areas of the United States -- to compete triumphantly among other skin disease groups for a grant from the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) to develop an Alopecia Areata Registry. NIAMS funded the Registry under Award Number HHSN268200682279C from September 23, 2000, through March 31, 2012. With gratitude to NIAMS for their financial support over many years, NAAF has assumed financial responsibility of this key research resource since Federal funding ended.
The Registry leadership team is working together with NAAF-designated third party vendors to transition the Registry data and associated samples to a new NAAF-designated informatics platform and next generation biorepository. As part of our initiative to ensure longevity and maximize utility, the Registry leadership team and NAAF-designated third party vendors are dedicated to maintaining security and data quality while significantly increasing our growth and engagement capacity. We have developed a Registry Roadmap to facilitate effectively working together at each step in this important endeavor. We wish to thank the Registry leadership team for building and stewarding this valuable resource and working closely with NAAF and our designated third party vendors to lead us to the next phase of growth and accessibility in our search for a treatment or a cure.
In order to facilitate the transition process, we have temporarily halted patient participation in the Registry and the collection and shipment of new samples.