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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.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 26 Research Tools
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CSER Phase 1: Genetic Information Nondiscrimination Act (GINA) Fact Sheet: "GINA & You"
Year: 2010This fact sheet describes the rights protected by the Genetic Information Nondiscrimination Act of 2008 in an easy to read format.
Research Population: Adults -
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 -
CSER Phase 1: Incidental Findings Choice Document
Year: 2015This questionnaire enables research participants to review categories of incidental findings that might be revealed during an exome test and select the categories of results that they would like to
Research Population: Adults -
CSER Phase 1: Baylor Advancing Sequencing into Childhood Cancer Care (BASIC3 Study)
Parent QuestionnaireThis questionnaire for parents was developed for the BASIC3 study.
Research Population: Parents -
CSER Phase 1: Baylor Advancing Sequencing into Childhood Cancer Care (BASIC3 Study) Family History Questionnaire
This questionnaire was developed for the BASIC3 study. It collects a detailed family history of cancer from parents about their child.
Research Population: Parents -
CSER Phase 1: Baylor Advancing Sequencing into Childhood Cancer Care (BASIC3 Study)
Child Health QuestionnaireThis questionnaire was developed for use in the BASIC3 study. It collects demographic and health information from parents about their child.
Research Population: Parents -
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] -
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]