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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.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 23 Research Tools
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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 -
CSER Phase 1: MIONCOSEQ Study FAQs
This document provides answers to frequently asked questions for participants in Personalized Oncology Through High-throughput Sequencing: Michigan Oncology Sequencing Center (MI-ONCOSEQ) Study.…
Research Population: Adults -
Genome Empowerment Scale (GEmS)
Year: 2019The GEmS can be used to assess the genomic healthcare empowerment of parents (e.g., the meaning of a diagnosis for their child, emotional management of the process, their confidence in utilizing th
Research Population: ParentsValidation(s):- McConkie-Rosell, A., Schoch, K., Sullivan, J., Spillmann, R. C., Cope, H., Tan, Q. K.-G., Palmer, C. G. S., Undiagnosed Disease Network,, Hooper, S. R., & Shashi, V. (2021). Clinical application of a scale to assess genomic healthcare empowerment (GEmS): Process and illustrative case examples. Journal of Genetic Counseling. Epub ahead of print.
- McConkie-Rosell, A., Schoch, K., Sullivan, J., Cope, Heidi, Spillmann, R. C., Palmer, C. G. S., Pena, Loren, Jiang, Y., Daniels, N., Walley, N., Tan, K. G., Undiagnosed Diseases Network, Hooper, S. R., Shashi, V. (2019). The Genome Empowerment Scale (GEmS): An assessment of parental empowerment in families with undiagnosed diseases. Clinical Genetics, 96(6), 521-531.
Contact: [email protected] -
Plain Text Script, Attitudes about the Ethics of Research on Medical Practices (RoMP)
Year: 2015This plain text script includes descriptions of the three animated videos that were utilized in the ROMP study, which assessed adult patient's attitudes toward research on medical practices in
Research Population: AdultsContact: [email protected] -
15-Item Genetic Essentialism Scale for Race (GESR)
Year: 2019The Genetic Essentialism Scale for Race (GESR) measures beliefs about the relationship between genes and race with 15 items.
Research Population: AdultsValidation(s):- Yaylacı, Ş., Roth, W. D., & Jaffe, K. (2019). Measuring racial essentialism in the genomic era: The genetic essentialism scale for race (GESR). Current Psychology, 1-15.
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Trust in Medical Researchers (Full and Short Scales)
Year: 2006Hall and colleagues report the development and validation of 12-item survey and a short form (4-item) survey designed to measure trust in medical researchers.
Research Population: AdultsValidation(s):- Cunningham-Erves, J., Villalta-Gil, V., Wallston, K. A., Boyer, A. P., & Wilkins, C. H. (2019). Racial differences in two measures of trust in biomedical research. Journal of clinical and translational science, 3(2-3), 113-119.
- Hall, M. A., Camacho, F., Lawlor, J. S., DePuy, V., Sugarman, J., & Weinfurt, K. (2006). Measuring trust in medical researchers. Medical care, 44(11), 1048-1053.
Contact: [email protected] -
Trust in Medical Researchers Scale
Year: 2006Mainous and colleagues report the development and validation of the 12-item Trust in Medical Resesearchers Scale. This scale is designed to be self-administered.
Research Population: AdultsValidation(s):- Cunningham-Erves, J., Villalta-Gil, V., Wallston, K. A., Boyer, A. P., & Wilkins, C. H. (2019). Racial differences in two measures of trust in biomedical research. Journal of clinical and translational science, 3(2-3), 113-119.
- Mainous, A. G., Smith, D. W., Geesey, M. E., & Tilley, B. C. (2006). Development of a measure to assess patient trust in medical researchers. The Annals of Family Medicine, 4(3), 247-252.
Contact: [email protected] -
9-Item Genetic Essentialism Scale for Race (GESR)
Year: 2020This version of the Genetic Essentialism Scale for Race (GESR) measures beliefs about the relationship between genes and race with 9 items.
Research Population: AdultsContact: [email protected]