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Research Tool
Attitudes of Parents of Sickle Cell Anemia (SCA) Affected Children Toward Prenatal Diagnosis of SCA Survey
Wonkam and colleagues designed this survey to gather information about how Cameroonian parents with SCA-affected children feel towards prenatal diagnosis and termination of an affected pregnancy. -
Research Tool
Gene Modification Therapy Scenarios for Parents of People with Down Syndrome
Michie and Allyse developed five scenarios that describe existing and hypothetical interventions for symptoms of Down syndrome (DS): 1) prenatal physical intervention, 2) prenatal cognitive… -
Research Tool
Prenatal Diagnoses of Sex Chromosome Aneuploidies Interview Guide
This semi-structured interview guide is intended for use with individuals diagnosed with a sex chromosome aneuploidy (SCA) or with parents of a child diagnosed with a SCA. It employs open-ended… -
Research Tool
Health Data Exploration Survey Questions (Individuals)
To understand challenges involved in the use of personal health data (PHD) in research, Bietz and colleagues created Health Data Exploration Survey Questions (Individuals) that examines the… -
Research Tool
Health Data Exploration Survey Questions (Researchers)
Bietz and colleagues created the Health Data Exploration Survey Questions (Researchers) to examine the experiences with and attitudes about self-tracking data among researchers who could potentially… -
Research Tool
California Consumers’ Views of Data Sharing for Healthcare And Research Survey
Kim, Joseph, and Ohno-Machado created the California Consumers’ Views of Data Sharing for Healthcare And Research Survey to assess technology use, opinions about electronic health records and… -
Research Tool
Genomic Results Educational Video for Adolescents
This 17 minute video provides adolescents with information on the meaning, limitations, and potential benefits and risks of receiving positive and negative genomic test results. -
Research Tool
eMERGE III Health Care Provider Work Group: Pre-return of Results Physician Interview Guide
This semi-structured interview guide provides physicians with scenarios in which adult and pediatric patients receive unsolicited genomic results and elicits their views about the need for provider… -
Research Tool
Provider Perceptions of Patient-Generated Family Health Histories Survey
This survey was designed to elicit responses from providers’ regarding their experiences with and perceptions about patient-generated family histories. -
Research Tool
Considerations Prior to Forming an Academic-Industry Partnership: Questions for Academic Researchers & Industry Researchers
Lehmann and colleagues created a list of questions for academic researchers and industry researchers to consider prior to forming an academic-industry partnership for the purposes of managing…