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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.
11 - 20 of 63 Research Tools
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Site Specific Tools for Participant Choices for Return of Genomic Results in the eMERGE Network
Year: 2020Several study sites in the third phase of the electronic MEdical Records and GEnomics (eMERGE) Network implemented protocols to enable research participants to choose the type of secondary results
Research Population: Adults -
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 -
CSER Phase 1: MIONCOSEQ Study Patient Vignettes
These patient vignettes, based on the experiences of real participants in the Michigan Oncology Sequencing Center (MI-ONCOSEQ) DNA sequencing study, help adults understand what to expect should the
Research Population: Adults -
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 -
Genomics ADvISER
Year: 2021Genomics ADvISER is a digital decision aid for use in the delivery of genomic counseling. It is intended as a supplement to genomic counseling with a counselor.
Research Population: AdultsContact: [email protected]