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Trust and Privacy Concerns Among Cancer Survivors Who Did Not Visit a Research Website Offering Free Genetic Counseling Services for Families: Survey Study

Trust and Privacy Concerns Among Cancer Survivors Who Did Not Visit a Research Website Offering Free Genetic Counseling Services for Families: Survey Study

Between March and July 2023, we sent recruitment packets randomly to 650 survivors representing three groups: (1) an active refusal group consisting of 230 survivors who had explicitly declined participation in the YFC parent study; (2) a passive refusal group consisting of 220 survivors whose mailing address was passively confirmed by the GCR (eg, a relative answered a call), yet who neither visited the study website nor explicitly declined participation; and (3) a lost group consisting of 200 survivors for

James A Shepperd, Colleen M McBride, Weihua An, Jingsong Zhao, Rebecca D Pentz, Cam Escoffery, Kevin Ward, Yue Guan

J Med Internet Res 2025;27:e64228

Exploring Caregiver Interest in and Preferences for Interventions for Children With Risk of Asthma Exacerbation: Web-Based Survey

Exploring Caregiver Interest in and Preferences for Interventions for Children With Risk of Asthma Exacerbation: Web-Based Survey

The first aim was to explore whether caregivers of children who experienced a recent exacerbation (ie, those with a high risk of experiencing future exacerbation) would express greater interest in the intervention programs and delivery methods than would caregivers of children who did not experience a recent exacerbation (ie, those with a low risk of future exacerbation).

Gabrielle Pogge, David A Fedele, Erika A Waters, Julia Maki, Jean M Hunleth, Sreekala Prabhakaran, Deborah J Bowen, James A Shepperd

JMIR Form Res 2023;7:e46341

Guidelines for Conducting Virtual Cognitive Interviews During a Pandemic

Guidelines for Conducting Virtual Cognitive Interviews During a Pandemic

COVID-19 was declared a national emergency in the United States in March 2020, prompting various social distancing protocols and other restrictions on in-person contact, including a moratorium on in-person human subject research imposed by institutional review boards (IRBs).

James A Shepperd, Gabrielle Pogge, Jean M Hunleth, Sienna Ruiz, Erika A Waters

J Med Internet Res 2021;23(3):e25173