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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.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 183 Research Tools
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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: 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: 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 -
CSER Phase 1: Primary Care 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 -
CSER Phase 1: Informed Consent Form and HIPAA Authorization - PediSeq: The Pediatric Genetic Sequencing Project
Year: 2013The purpose of PediSeq: The Pediatric Genetic Sequencing Project was to identify best practices for educating patients about exome and genome sequencing, determining the sequencing data relevent to
Research Population: Parents, Children -
CSER Phase 1: Consent Form - ClinSeq : A Large-Scale Medical Sequencing Clinical Research Pilot Study
Year: 2015This consent form for adult patients or parents of minor patients (with child assent) includes standard consent language and the ability for participants to “opt out” of learning about genome seque
Research Population: Parents, Adults -
CSER Phase 1: Consent Form - CanSeq, The use of sequencing to guide the care of cancer patients study
Year: 2014This consent form for the CanSeq study included permission to perform genetic tests on tissue specimens that had already been collected and stored as part of clinical care or other research studies
Research Population: Adults