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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.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 207 Research Tools
-
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: Physician Consent Form - Incorporation of Genomic Sequencing into Pediatric Cancer Care Study
Year: 2016This physician 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 Pediat
Research Population: Physicians -
CSER Phase 1: Age of Majority Consent Form- Incorporation of Genomic Sequencing into Pediatric Cancer Care Study
Year: 2014This draft age of majority consent form was designed to be used in the Incorporation of Genomic Sequencing into Pediatric Cancer Care Study.
Research Population: Adults -
CSER Phase 1: Primary Care Physician Consent Form - The MedSeq™ Pilot Project: Integrating Whole Genome Sequencing into Clinical Medicine
Year: 2013The purpose of the MedSeq Project was to develop a process for a process for integrating information obtained from whole genome sequencing into clinical practice and to explore how physicians and t
Research Population: Physicians -
CSER Phase 1: Cardiology Patient Consent Form - The MedSeq™ Pilot Project: Integrating Whole Genome Sequencing into Clinical Medicine
Year: 2010The purpose of the MedSeq Project was to develop a process for a process for integrating information obtained from whole genome sequencing into clinical practice and to explore how physicians and t
Research Population: Adults