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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.
31 - 40 of 98 Research Tools
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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: Parent Consent Form - Incorporation of Genomic Sequencing into Pediatric Cancer Care Study
Year: 2016This parent 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 Pediatric
Research Population: Parents -
CSER Phase 1: Patient Consent Form - Incorporation of Genomic Sequencing into Pediatric Cancer Care Study
Year: 2016This patient 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 Pediatri
Research Population: Parents -
CSER Phase 1: Cardiologist 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: Physicians -
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.
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Which Medication is Best? (Video), Attitudes about the Ethics of Research on Medical Practices (RoMP)
Year: 2015This 3 minute video was utilized in the ROMP study, which assessed adult patient's attitudes toward research on medical practices in the context of 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.
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Approaches to Research on Medical Practices (Video), Attitudes about the Ethics of Research on Medical Practices (RoMP)
Year: 2015This 3 minute video was utilized in the ROMP study, which assessed adult patient's attitudes toward research on medical practices in the context of 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.
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Informing or Asking (Video), Attitudes about the Ethics of Research on Medical Practices (RoMP)
Year: 2015This 2 minute video was utilized in the ROMP study, which assessed adult patient's attitudes toward research on medical practices in the context of 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.
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Introduction to Precision Medicine Research (Video), The VALUES Project, Patient Values and Attitudes about a Library of Knowledge: Uses of EHRs and Samples in Research
Year: 2018This short (2–3 minute) animated video in one in a series of six, English language videos in this database that describe the concept and process of precision medicine research.
Research Population: AdultsContact: [email protected] -
Setting up a Biorepository (Video), The VALUES Project, The VALUES Project, Patient Values and Attitudes about a Library of Knowledge: Uses of EHRs and Samples in Research
Year: 2018This short (2–3 minute) animated video in one in a series of six, English language videos in this database that describe the concept and process of precision medicine research.
Research Population: AdultsContact: [email protected]