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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.
61 - 70 of 113 Research Tools
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Preferences for the Return of Pediatric Biobank Results Survey
Year: 2017Christensen and colleagues developed a survey to enable parents of pediatric patients to set preferences for return of individual results from research on pediatric biobank samples based on disease
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 2 Patient-Initiated Actions Attributable to Genomic Testing (PIA) Survey
Year: 2019The Patient-Initiated Actions Attributable to Genomic Testing Survey, developed by the Clinical Utility, Health Economics, and Policy (CUHEP) working group, asks adult patients to report whether th
Research Population: Adults, Parents -
CSER Phase 2 Follow Through on Medical Actions Attributable to Genomic Testing (MRA) Survey
Year: 2019The Follow Through on Medical Actions Attributable to Genomic Testing Survey, developed by the Clinical Utility, Health Economics, and Policy (CUHEP) working group, measures whether parents of pedi
Research Population: Parents -
CSER Information Seeking Measure
The CSER Information Seeking Measure (two versions) is a single-item measure that assesses the sources of information that patients think they will be likely to use to obtain further information ab
Research Population: Adults, 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 -
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]