"Large percentages of African Americans are willing participants for Alzheimer's genetic studies, if culturally sensitive techniques are used to recruit them," Byrd said.
Why People with Alzheimer's and Their Relatives Participate in Clinical Studies
In order to further inform the clinical study recruitment process, Ulrika Akenine, MS, a registered nurse at the Memory Clinic, Geriatrics Department, KarolinskaUniversityHospital, Stockholm, and colleagues investigated the motives and expectations of people with dementia and their relatives for participating in Alzheimer's research trials.
For the study, 19 people with mild to moderate Alzheimer's, average age 66 years, and their relatives (20 caregivers) participating in five different vaccination studies at the clinic answered a questionnaire during October and November 2008. Primary motives to participate for both patients and their relatives were helping science and contributing to research, hope for easing of symptoms or cure, and getting access to more information about the disease. Patients and relatives reported that access to medical expertise and regular health checkups were advantages of study participation.
Among the disadvantages were the risk of receiving placebo, discomfort/pain during sample-taking and exams, and the risk of side effects. People with Alzheimer's reported to a greater extent than caregivers that they did not see any disadvantages to participating in a research study.
"Research on Alzheimer's is intense, and there is great hope for new drugs that will ease the impact of the disease," Akenine said. "Many people with dementia and caregivers will face the question of whether to participate in clinical trials. We hope our research helps inform healthcare providers, advocacy or
|SOURCE Alzheimer's Association|
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