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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.
1 - 10 of 20 Research Tools
-
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 -
CSER Phase 1: X-Linked Explanation Card
Year: 2013This short explanation card defines carrier status for X-linked recessive conditions.
Research Population: Parents -
CSER Phase 1: Revised Carrier Status Explanation Card
Year: 2012This hort explanation card defines carrier status for recessive genetic conditions.
Research Population: Parents -
Interview Guide, Moral Views of Gene Drive Technology Experts
Year: 2021This semi-structured interview guide is intended for use with gene drive technology (GDT) experts. It was developed using ethical arguments identified by the authors via literature review.
Research Population: Experts -
IRB Member Focus Group Guide, Attitudes about the Ethics of Research on Medical Practices (RoMP)
Year: 2017This focus group guide assesses the perspectives of IRB professionals toward research on medical practices within usual care.
Research Population: IRB ProfessionalsContact: [email protected] -
Patient Focus Group Guide, Attitudes about the Ethics of Research on Medical Practices (RoMP)
Year: 2015This focus group guide assesses patient attitudes toward research on medical practices within usual care.
Research Population: AdultsValidation(s):- Kraft, S. A., Constantine, M., Magnus, D., Porter, K. M., Lee, S. S. J., Green, M., Kass, N. E., Wilfond, B. S., Cho, M. K. (2017). A randomized study of multimedia informational aids for research on medical practices: Implications for informed consent. Clinical Trials, 14(1), 94-102.
Contact: [email protected] -
Focus Group Guide, Perceived Need for Research Ethics Consultation
Year: 2009This focus group guide (see the methods, focus groups section of the linked article) was designed to assess interest in a research ethics consultation service.
Research Population: Biomedical ResearchersContact: [email protected] -
Semi-structured Interview Guide, Recall by Genotype (RbG) Research
Year: 2018This topic guide can be used to interview research participants on their perceptions of recall by genotype research, which recruits on the basis of genotype.
Research Population: AdultsContact: [email protected] -
Semi-structured Interview Guide, International Health Research Collaborations
Year: 2017This interview guide was developed to elicit African researchers experiences in international health research consortia; perceived benefits and risks of participation, and their recommendations for
Research Population: Genomics ResearchersContact: [email protected]