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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.
191 - 200 of 217 Research Tools
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Genetics Post-Course Survey (Genotype Data)
Year: 2013Salari and colleagues designed this survey to measure student attitudes and knowledge about genomics and personalized medicine after taking an 8-week course on genomics and personalized medicine.
Research Population: StudentsContact: [email protected] -
CSER Phase 2 Parental Patient Measures – BASELINE
Year: 2018This baseline measure for parents enables the collection of information on sex, age, language, income, education level, insurance status, country of origin, access to care, health literacy, subject
Research Population: Parents -
CSER Phase 2 - Feelings about Genomic Testing Results (FACToR) – Parent
Year: 2018This post-return of child genetic test results survey for parents assesses the psychosocial impact of receiving genomic findings by measuring how much participants had specific feelings such as anx
Research Population: ParentsValidation(s):- Li, M., Bennette, C. S., Amendola, L. M., Ragan Hart, M., Heagerty, P., Comstock, B., Tarczy-Hornoch, P., Fullerton, S. M., Regier, D. A., Burke, W., Trinidad, S. B., Jarvik, Gail P., Veenstra, D. L., Patrick, D. L. (2019). The feelings about genomiC testing results (FACToR) questionnaire: development and preliminary validation. Journal of Genetic Counseling, 28(2), 477-490.
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CSER Phase 2 Parent Decliner Survey
Year: 2018This survey for study decliners captures demographic and insurance status information and elicits information about why parents declined to enroll their child in the study such as privacy concerns,
Research Population: Parents -
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 -
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 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: Parental Consent for Child to Participate in a Research Study, Minor Subjects- Relatives of Study Subject - NCGENES: A Next-Generation Sequencing Platform for Genetic Diagnosis and Research
Year: 2014This parental consent form from the NCGENES: A Next-Generation Sequencing Platform for Genetic Diagnosis study is designed for the minor relatives of NCGENES study participants that received a gene
Research Population: Parents -
CSER Phase 1: Tumor Mutation Explanation Card
Year: 2012This short explanation card defines a tumor mutation and describes what parents of pediatric patients can expect from a tumor mutation report.
Research Population: Parents -
CSER Phase 1: Inherited Mutation Explanation Card
Year: 2012This short explanation card defines an inherited mutation and describes the information that parents might find on their child's inherited mutation report.
Research Population: Parents