Alaska Native Parkinson's Disease Registry
Abstract
Parkinsonism (PS) is a syndrome characterized by tremor, rigidity, slowness of movement, and problems with walking and balance. Parkinson's disease is the most common form of PS, accounting for about 1% of the U.S. population over age 50 years. Little information is available about trends in PS, particularly among Alaska Natives. This registry initiates a program of epidemiological assessment of PS among Alaska native people to study the natural history and clinical management of PS, and establishes a data base 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 will not only facilitate future research into PS etiology, but also will guide health care planning and community education efforts in this population. The proposal takes advantage of a case control study of PS that is commencing in the same population. The registry will be developed in two phases. During Phase 1, data collection and dissemination protocols will be established, necessary approvals for the registry will be obtained, and a pilot project in Anchorage will be initiated following the approvals. Phase 1 is currently underway. Phase 2 is a period of educational outreach and active statewide data collection on prevalent and incident cases of PS. Phase 2 has not yet begun. After Phase 2 ends, the registry will be sustained through the Alaska Native Medical Center. The aims of this project are as follows: (1) Identify all cases of PS among Alaska Native peoples and develop an electronic registry database on them; (2) Broadly characterize the clinical features of PS among Alaska Native peoples; (3) Identify factors influencing the clinical care and management of Alaska Native individuals with PS; and (4) Provide education on PS and its treatment to primary care physicians, other health care providers, patients, and caregivers.
Document Details
- Document Type
- Technical Report
- Publication Date
- Nov 01, 2009
- Accession Number
- ADA511588
Entities
People
- Brian A. Trimble
Organizations
- Alaska Native Tribal Health Consortium