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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.
71 - 80 of 122 Research Tools
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Provider Perceptions of Patient-Generated Family Health Histories Survey
Year: 2009This survey was designed to elicit responses from providers’ regarding their experiences with and perceptions about patient-generated family histories.
Research Population: PhysiciansContact: [email protected] -
Attitudes of Parents of Sickle Cell Anemia (SCA) Affected Children Toward Prenatal Diagnosis of SCA Survey
Year: 2011Wonkam and colleagues designed this survey to gather information about how Cameroonian parents with SCA-affected children feel towards prenatal diagnosis and termination of an affected pregnancy.
Research Population: ParentsContact: [email protected] -
Genetic Genealogy Experiences Survey
Year: 2022Guerrini and colleagues designed the Genetic Genealogy Experiences Survey to gather information about the experiences of users of genetic relative-finder services offered by direct-to-consumer gene
Research Population: AdultsContact: [email protected] -
ELSI Research Methods Questionnaire
Year: 2023Cho and colleagues created this questionnaire to understand the research methodologies currently being used in the study of the ethical, legal, and social implications (ELSI) of genetics and…
Research Population:Contact: [email protected] -
How Does Genetic Ancestry Testing Affect Perceptions of Race? Conjoint Survey Instrument
Year: 2022The Conjoint Survey Instrument is a survey instrument developed for the study “How Does Genetic Ancestry Testing Affect Perceptions of Race?” The study explores how respondents make racial classifi
Research Population: AdultsContact: [email protected] -
The Parental Personal Utility Scale (Parent PrU)
Year: 2024The Personal Utility Scale (PrU) asks participants to rate how useful they find nineteen outcomes of genome sequencing on a scale ranging from 1 (not at all useful) to 7 (extremely useful).
Research Population: Adults, ParentsValidation(s):Turbitt, E., Kohler, J. N., Brothers, K. B., Outram, S. M., Rini, C., Sahin-Hodoglugil, N., Leo, M. C., & Biesecker, B. B. (2024) The Parent PrU: A measure to assess personal utility of pediatric genomic results. Genetics in Medicine, 16(1), Article 100994.
Contact: [email protected] -
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