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Recruitment of members of high-risk Utah pedigrees
Insights
This study investigated genetic and environmental factors for early heart disease, stroke, and hypertension in Utah families. High recruitment rates were achieved through persistent contact methods, with socioeconomic factors influencing participation.
Area of Science:
- Cardiovascular Genetics
- Population Health
- Genetic Epidemiology
Background:
- Investigating genetic and environmental factors for early-onset cardiovascular diseases (coronary disease, stroke, hypertension).
- Focus on population-based pedigrees to understand familial disease patterns.
- Defining early coronary disease as events before age 55.
Purpose of the Study:
- To report on the recruitment experience and response rates in a large, high-risk pedigree study.
- To identify factors associated with participation in cardiovascular genetics research.
- To analyze recruitment costs within the High-Risk Pedigree Project.
Main Methods:
- Recruited 2500 individuals (ages 3-83) across 98 high-risk pedigrees.
- Employed multi-modal contact strategies (phone, mail, in-person) to maximize response rates.
- Conducted two screening cycles (1980-1983 and 1983-1986) achieving 94% and 91% response rates, respectively.
Main Results:
- High overall response rates achieved (94% first visit, 91% second visit).
- Lower response rates observed in individuals with less education, current smokers, and divorced persons.
- Higher response rates noted in college attendees and those with higher family incomes (>$25,000).
- No significant differences in response rates based on sex or age.
Conclusions:
- Persistent, multi-contact recruitment strategies are effective in high-risk pedigree studies.
- Socioeconomic and lifestyle factors can influence participation in genetic research.
- Understanding participation barriers is crucial for future population-based genetic studies.
Abstract:
Cardiovascular Genetics Research Projects in Utah are designed to investigate genetic and environmental determinants of early coronary disease, stroke, and hypertension in population-based pedigrees. Early coronary disease is defined as the occurrence of documented coronary death or myocardial infarction before age 55. Detailed recruitment experience is reported for 2500 persons age 3-83 years in 98 high-risk pedigrees from three ascertainment groups: 1. Descendants of sibships with two or more stroke deaths before age 75. 2. Descendants of sibships with two or more coronary deaths before age 55. 3. First- and second-degree relatives of hypertensive and normotensive probands randomly selected from the Utah Hypertension Detection and Follow-up Program. A response rate of 94% of invited adults attending the first 4-hour clinic visit for detailed screening in 1980-1983 was achieved by multiple telephone, mail, and personal contacts and rescheduling of missed clinic appointments. For the same participants, a second screening cycle in 1983-1986 showed a 91% response of invited adults. Second visit response rates were examined within subgroups according to data collected at the first clinic visit. Below average response rates included 79% of persons with fewer than 12 years of education, 84% of current smokers, and 86% of divorced persons. Above average response rates included 93% of persons attending college and 95% of persons with total family income above $25,000. There were no differences in response according to sex or age. The average cost of recruitment was $59 per person and represented about 10% of the total budget for the High-Risk Pedigree Project.