Alaska Native Parkinson's Disease Registry
Abstract
This registry initiates a program of epidemiological assessments of PS among Alaska Native people to study the natural history and clinical management of PS, and establishes a database of Alaska native people with PS for public health, research and educational purposes. As feasible, the prevalence of PS in Alaska Native people may be estimated as well. This registry not only would facilitate future research into PS etiology, but also guide health care planning and community education efforts in this population. The proposal takes advantage of a case control study of PS that is ongoing in the same population. The registry is designed in two phases. Phase 1 is a developmental period and is well underway at this time. During this phase, we established the data collection and dissemination protocols, a surveillance protocol received IRB approval but is pending approval by a privacy board, the registry database is complete and a pilot project in Anchorage will be initiated pending approvals. Phase 2 has not yet begun. It is a period of educational outreach and active statewide data collection on prevalent and incident cases of PS. After Phase 2 ends, the registry will be sustained through the Alaska Native Medical Center.
Document Details
- Document Type
- Technical Report
- Publication Date
- Jun 01, 2011
- Accession Number
- ADA609150
Entities
People
- Brian A. Trimble
Organizations
- Alaska Native Tribal Health Consortium