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- EIN 47-3601782
- (415) 626-1501
- 2700 Horizon Dr Ste 120 Kng Of Prussa PA 19406-2726 USA
- www.ftdregistry.org
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Nonprofit Overview
Causes: Alzheimers Disease, Health
Mission: The registry also serves investigators conducting research, clinicians treating patients, epidemiologists analyzing disease data, and investigators seeking patients for new clinical trials and initiating natural history studies.
Programs: Goals of the registry are to:provide a centralized registry effort across the frontotemporal disorders spectrum, making de-identified data available to a diversity of stakeholders to support health outcomes research and other studies of interest to patient advocacy groups, clinical and basic science researchers. Improve the understanding of disease genotype and phenotype; improve quality of care; and provide a better understanding of disease epidemiology. Provide a centralized resource that can facilitate clinical trial enrollment for ftd disorders and the utility of preventive strategies by providing high quality, aggregate data, and a means of alerting a base of volunteers to clinical trial and research study opportunities.
provide a mechanism for coordinating and querying registrant volunteers to inform on more patient-friendly clinical trial design and potentially regulatory and policy groups in aid of patient-focused drug development. Thrive as a dynamic resource that can adapt to the ftd (and related disorders) research landscape and needs of the lay community.