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 will 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 was 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 and developed a surveillance protocol that received IRB approval. The electronic registry database is complete, surveillance has begun in Anchorage. Phase 2 has just begun in Southeast AK where tribal board approval was recently obtained. Phase 2 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
- Jul 01, 2013
- Accession Number
- ADA609026
Entities
People
- Caroline M. Tanner