This article is a report of the design and methods of the Genetics of Coronary Artery Disease in Alaska Natives (GOCADAN) Study. This longitudinal, population-based study was initiated to investigate the genetic determinants of cardiovascular disease and its risk factors. Between October 2000 and April 2004, this family study enrolled 1,214 Eskimos from several coastal villages in the Norton Sound region of Western Alaska. Examinations included a physical, laboratory determinations, and measures of subclinical disease. This study will generate a genome-wide scan for loci influencing cardiovascular disease-related traits. Relations between subclinical atherosclerosis and markers of inflammation will be examined using historic and newly drawn samples. The study will provide data on CVD prevalence, risk factors and the relative contribution of genetic and environmental determinants in Alaska Native peoples. Data from this study will contribute to the delivery of health-care and prevention of CVD in Alaska Eskimos and other populations.
Dramatic improvements of risk factors for DM and CVD were achieved in the intervention by primarily stressing the need for changes in the consumption of specific fats. The results suggest that fat consumption is an important risk factor for DM.
Recent changes in lifestyle and diet of Alaskan Eskimos, leading to obesity, hypertension, insulin resistance and DM, contribute to an increased risk for cardiovascular disease.
Objectives. To study heart and vascular disease in Alaskan Eskimos. To identify risk factors for CVD in Norton Sound Eskimos. Study Design. Participatory research. In this paper, procedures for selection and enrollment and providing feedback and referrals are described. Our working relationships with the Norton Sound Health Corporation (NSHC) Board, the village councils, individuals, and communities are also described. Methods. This study was conducted in the Norton Sound region of Alaska. The participants were members of Alaskan Eskimo families. Results. Procedures were formed for selecting and enrolling extended families into the study and for working with the NSHC Board, the village councils, and individual participants. The average participation was 82.6% of the age-eligible villagers in seven villages. A four-level referral system was designed. Test results were provided to participants in the form of letters, with duplicates sent to health care providers and medical records. A senior researcher returned to the village to explain the results to the participants. Conclusions. Principles of participatory research applied and developed in this study led to successful screening of 1214 Eskimos in nine villages between October 2000 and June 2004. This partnership developed into a relationship with the community, in which researchers and the communities mutually participated in the study, from the initiation of the design to the return of the data to the individuals, communities, and health care providers. (Int J Circumpolar Health 2006; 65(1):55-64.)
ALS is progressive with increasing patient needs for durable medical equipment (DME) and interventions (gastric feeding tube - PEG, and non-invasive ventilation - NIV). We performed a chart review of deceased patients to determine the time-course of needs and their estimated costs. A timeline of needs was based on when clinic personnel felt an item was necessary. The point in time when an item or intervention was needed was expressed as a percentage of a patient's total disease duration. A wide range of DME and interventions was needed irrespective of site of ALS symptom onset (bulbar, upper, lower extremity), beginning at 10% of disease duration of lower extremity onset and increasing thereafter for all sites. The cumulative probability of costs of items and interventions began at 25%-50% of disease duration and increased to between $18,000 and $32,000 (USD), highest for lower extremity onset due to the cost of wheelchairs. We conclude that a high percentage of ALS patients will need a full spectrum of major DME items and interventions during the second half of disease duration. This results in a linear rise in costs over the second half of the disease duration.
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