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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.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 71 Research Tools
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CSER Phase 1: Incidental Findings Choice Document
Year: 2015This questionnaire enables research participants to review categories of incidental findings that might be revealed during an exome test and select the categories of results that they would like to
Research Population: Adults -
CSER Phase 1: Baylor Advancing Sequencing into Childhood Cancer Care (BASIC3 Study)
Parent QuestionnaireThis questionnaire for parents was developed for the BASIC3 study.
Research Population: Parents -
CSER Phase 1: Baylor Advancing Sequencing into Childhood Cancer Care (BASIC3 Study) Family History Questionnaire
This questionnaire was developed for the BASIC3 study. It collects a detailed family history of cancer from parents about their child.
Research Population: Parents -
CSER Phase 1: Baylor Advancing Sequencing into Childhood Cancer Care (BASIC3 Study)
Child Health QuestionnaireThis questionnaire was developed for use in the BASIC3 study. It collects demographic and health information from parents about their child.
Research Population: Parents -
Common survey items, eMERGE participant survey at 0-1 month post disclosure
Year: 2018This survey covers disclosure of genetic test results to family members, plans for follow up care, plans for behavior changes, demographic information, and other topics.
Research Population: Adults -
Common survey items, eMERGE participant survey at 6-12 months post disclosure
Year: 2018This survey covers disclosure of genetic test results to family members, follow up care, behavior changes, and other topics. It can be administered using REDCap.
Research Population: Adults -
CSER Phase 2 Organizational Readiness to Change Assessment
Year: 2018The CSER Organizational Readiness to Change Assessment measures the readiness of healthcare systems to implement clinical sequencing.
Research Population: Adults -
Manual for Deliberative Focus Group Discussions (dFGDs) on Feedback of Individual Findings in Genomic Research among Lay Individuals who have Participated in Genomics Research
Year: 2019The Manual for Deliberative Focus Group Discussions (dFGDs) on Feedback of Individual Findings in Genomic Research was originally developed for use among adults and adolescents enrolled in genomics
Research Population: AdultsContact: [email protected] -
General Population and Patient Survey, Attitudes about the Ethics of Research on Medical Practices (RoMP)
Year: 2017This self-administered, web-based survey using an experimental between-group design to compare the effects of four informational aids on respondents’ understanding of core aspects of research on me
Research Population: AdultsContact: [email protected] -
PRIM&R Member Survey, Attitudes about the Ethics of Research on Medical Practices (RoMP)
Year: 2016The PRIM&R Member Survey was used in the ROMP study to elicit the perspectives of a random selection of human subjects research professionals from the Public Responsibility in Medicine and Rese
Research Population: AdultsContact: [email protected]