Organizations Filed Purposes:
partners, and those at risk for FTD to advance research and understanding of this condition. See additional information on Schedule O.
The FTD Disorders Registry LLC pro- vides a patient registry for those afflicted with the devastating neurodegener- ative disease of Frontotemporal degeneration, for which currently, there is no cure. The Registry collects data from persons diagnosed, their care (cont. pg 2)
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.
Executives Listed on Filing
Total Salary includes financial earnings, benefits, and all related organization earnings listed on tax filing
| Name | Title | Hours Per Week | Total Salary |
|---|
| Diana Shineman | Director | 4 | $0 |
| Susan Dickinson | Director | 4 | $0 |
| Patrick Brannelly | Director | 4 | $0 |
| Laura Mitic | Secretary | 4 | $0 |
| Rodney Pearlman | Treasurer | 4 | $0 |
| Jary Larsen | President | 4 | $0 |
Data for this page was sourced from XML published by IRS (
public 990 form dataset) from:
https://s3.amazonaws.com/irs-form-990/202023199349301012_public.xml