Discover data collection instruments and related materials in the Research Tools database. Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.
21 - 30 of 30 Research Tools
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CSER Phase 1: Parent Consent Form - Incorporation of Genomic Sequencing into Pediatric Cancer Care Study
Year: 2016This parent consent form was approved by the Institutional Review Board for the Baylor College of Medicine and Affiliated Hospitals for use in the Incorporation of Genomic Sequencing into Pediatric
Research Population: Parents -
Newborn Whole Genome Sequencing Scenarios
Year: 2013Goldenberg, Dodson, Davis, & Tarini created two scenarios to assess parents’ interest in whole-genome sequencing (WGS) for newborns.
Research Population: ParentsContact: [email protected] -
Semi-Structured Interview Guide: Storage and Use of Residual Newborn Bloodspots
Year: 2014Botkin and colleagues created this semi-structured interview guide to uncover what prospective parents are interested in knowing about the practice of retaining residual newborn screening bloodspot
Research Population: ParentsContact: [email protected] -
Vignette for Exploring the Importance of Shared Decision Making about Genomic Research Participation
Year: 2019Bukini and colleagues designed the vignette used in theis study to explore the importance of shared decision making about research participation in Ghana and Cameroon.
Research Population: ParentsContact: [email protected] -
Attitudes of Parents of Sickle Cell Anemia (SCA) Affected Children Toward Prenatal Diagnosis of SCA Survey
Year: 2011Wonkam 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 Population: ParentsContact: [email protected] -
Gene Modification Therapy Scenarios for Parents of People with Down Syndrome
Year: 2018Michie and Allyse developed five scenarios that describe existing and hypothetical interventions for symptoms of Down syndrome (DS): 1) prenatal physical intervention, 2) prenatal cognitive interve
Research Population: Parents -
Questionnaire: “Data in question. ELSI Challenges in Biobank-based Research”
Year: 2019Goisef and colleagues developed a survey for professionals working in research-based biobanks in Europe that assess their satisfaction with current ELSI-related procedures.
Research Population: ResearchersContact: [email protected] -
CSER Phase 1: Assent Form: (Ages 15-17) Relatives of a Study Subjects - NCGENES: A Next-Generation Sequencing Platform for Genetic Diagnosis and Research
Year: 2014This assent form from the NCGENES: A Next-Generation Sequencing Platform for Genetic Diagnosis study is designed for the adolescent (aged 15-17) relatives of NCGENES study participants with a genet
Research Population: Adolescents -
The Genetics of Alzheimer's (Video)
Year: 2010This short (3 minute) English language video provides information on Alzheimer's disease, including its genetic component.
Research Population: Adults, AdolescentsContact: [email protected] -
Genomic Results Educational Video for Adolescents
Year: 2019This 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 Population: AdolescentsContact: [email protected]