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Increasing Participation of Women with Intellectual Disabilities in Randomized Control Trials through Enhanced Recruitment and Consent
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Increasing Participation of Women with Intellectual Disabilities in Randomized Control Trials through Enhanced Recruitment and Consent

Jamie G Swaine, Susan L Parish, Karen Luken, Lindsey Atkins and Maria Timberlake
Brandeis University, The Heller School of Social Policy
01/2012

Abstract

Disabled people randomized controlled trials recruitment consent women with intellectual disabilities Clinical Trials Developmental Disabilities Intellectual Disabilities People with Disabilities Womens Health
Although significant barriers impede the participation of women with developmental disabilities in randomized controlled trials, recruitment and consent can be improved. 75% of women with intellectual disabilities who attended an information session to learn about a health care intervention study in one state agreed to participate. The women were interested in learning how to improve their health, responded with understanding and interest to visual depictions of research activities, and appreciated receiving compensation for their time. Researchers can increase the engagement of women with developmental disabilities in randomized controlled studies by using multi-modal activities to explain the purpose and procedures to all parties. Reading each section of the consent form aloud, explaining in detail, and illustrating key concepts on the forms not just to women with disabilities, but to family members, guardians, and professionals, were effective in increasing enrollment and informed consent.
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