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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.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 24 Research Tools
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CSER Phase 1: Baylor Advancing Sequencing into Childhood Cancer Care (BASIC3) Germline Sequencing Form
Year: 2014This form is for physicians to record demographic and clinical information about a patient to facilitate laboratory interpretation of whole exome sequencing results.
Research Population: Adults, Children -
Genomics ADvISER
Year: 2021Genomics ADvISER is a digital decision aid for use in the delivery of genomic counseling. It is intended as a supplement to genomic counseling with a counselor.
Research Population: AdultsContact: [email protected] -
Optional Results Choice Aid (ORCA)
Year: 2021The Optional Results Choice Aid (ORCA) is a decision aid to support informed, values based decision-making for adult patients and research participants about the reciept of medically actionable, ad
Research Population: AdultsContact: [email protected] -
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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Consent to Share Genetic and Health Information, Clinical Genome Resource (ClinGen)
Year: 2017This one-page consent form helps to faciliate consent and promote broad genomic data sharing in the clinical setting.
Research Population: AdultsContact: [email protected] -
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]