Research Tools

This 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. The video series was developed for the VALUES Project, Patient Values and Attitudes about a Library of Knowledge: Uses of EHRs and Samples in Research, with health communications experts at Booster Shot Media. In the VALUES project, the videos were shown ahead of focus group discussions with a multilingual set of research participants about the use of their EHR data and biospecimens in precision medicine research. For studies that utilize these videos see: Lee, S.S., Cho, M.K., Kraft, S. A., Varsava, N., Gillespie, K., Ormond, K. E., Wilfond, B. S., Magnus, D .(2018) “I don't want to be Henrietta Lacks": Diverse patient perspectives on donating biospecimens for precision medicine research. Genetics in Medicine; Cho, M. K., Varsava, N., Kraft, S. A., Ashwal, G., Gillespie, K., Magnus, D., Ormond, K. E., Thomas, A., Wilfond, B. S., Lee, S. S-J. (2017) Metaphors matter: From biobank to a library of medical Information. Genetics in Medicine; and Kraft, S. A., Cho, M. K., Gillespie, K., Halley, M., Varsava, N., Ormond, K. E., Luft, H. S., Wilfond, B. S., & Lee, S. S-J. (2018) Beyond consent: Building trusting relationships with diverse populations in precision medicine research. American Journal of Bioethics.

This 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. The video series was developed for the VALUES Project, Patient Values and Attitudes about a Library of Knowledge: Uses of EHRs and Samples in Research, with health communications experts at Booster Shot Media. In the VALUES project, the videos were shown ahead of focus group discussions with a multilingual set of research participants about the use of their EHR data and biospecimens in precision medicine research. For studies that utilize these videos see: Lee, S.S., Cho, M.K., Kraft, S. A., Varsava, N., Gillespie, K., Ormond, K. E., Wilfond, B. S., Magnus, D .(2018) “I don't want to be Henrietta Lacks": Diverse patient perspectives on donating biospecimens for precision medicine research. Genetics in Medicine; Cho, M. K., Varsava, N., Kraft, S. A., Ashwal, G., Gillespie, K., Magnus, D., Ormond, K. E., Thomas, A., Wilfond, B. S., Lee, S. S-J. (2017) Metaphors matter: From biobank to a library of medical Information. Genetics in Medicine; and Kraft, S. A., Cho, M. K., Gillespie, K., Halley, M., Varsava, N., Ormond, K. E., Luft, H. S., Wilfond, B. S., & Lee, S. S-J. (2018) Beyond consent: Building trusting relationships with diverse populations in precision medicine research. American Journal of Bioethics.

The CSER Organizational Readiness to Change Assessment measures the readiness of healthcare systems to implement clinical sequencing. It is comprised of 19 items from an existing measure, the ORCA (Organizational Readiness to Change Assessment, and should be administered at 0-8 weeks since study initiation to six to ten executives, administrators, managers, or clinicians at each site participating in your project.

The Genetic Essentialism Scale for Race (GESR) measures beliefs about the relationship between genes and race with 15 items. Please see Table 1 of linked article by Yaylacı and colleagues for complete list of survey items. Participant responses are recorded on a five-point Likert scale (“Strongly Disagree” to “Strongly Agree” or “Don’t Know”).

This 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 Cancer Care Study. The purpose of the study was learn how to report and use clinical exome sequencing test results for childhood cancer patients.

The Personalized Oncology Through High-throughput Sequencing: MI-ONCOSEQ (Michigan Oncology Sequencing Center) (formerly known as “Personalized Medicine Based on Molecular Profiling of Patients with Cancer”) study implements a mechanism for patients who have advanced or refractory cancer to undergo tumor sequencing, sequence analysis, and return of clinically significant sequence results to patients, their families and the clinicians. This document is the revised study protocol. It contains 5 appendices: 1. Study Calendar; 2. Sample Molecular Report; 3. Adverse Event Reporting Form; 4. Genes Queried; 5. Genetic Information Nondiscrimination Act.

This short (3 minute) English language video provides information on Alzheimer's disease, including its genetic component. This video underscores Alzheimer's disease as a complex and multi-determined condition; it clarifies that predictive genetic testing offers a probability of developing the disease, not a definite result. For a study that utilizes this video: Pavarini, G., Hamdi, L., Lorimer, J., & Singh, I. (2021). Young people's moral attitudes and motivations towards direct-to-consumer genetic testing for inherited risk of Alzheimer disease, European Journal of Medical Genetics, 64(6), 1-7.

This one-page consent form helps to faciliate consent and promote broad genomic data sharing in the clinical setting. The language use on the form is consistent with the NIH Genomic Data Sharing Policy and the NHGRI Informed Consent Resource. The consent form was developed by the Clinical Genome Resource (ClinGen), a not-for-profit, National Institutes of Health (NIH)-funded resource dedicated to sharing genetic data, building knowledge, and improving patient care. The file contains two pages; one with the ClinGen logo in the bottom corner and the other without the logo. ClinGen also created a supplemental video and brochure that can be viewed in concert with this form for more information on genomic data sharing, including the risks and benefits invovled.

The 10 minute video explains key concepts outlined in the Consent to Share Genetic and Health Information form. It include testimonials on the importance of data sharing as well as information on the risks and benefits involved. The video was developed by the Clinical Genome Resource (ClinGen), a not-for-profit, National Institutes of Health (NIH)-funded resource dedicated to sharing genetic data, building knowledge, and improving patient care.

This is a printable version of the information from the Clinical Broad Data Sharing Consent Video (see this database). It describes key concepts outlined in the consent form, includes testimonials on the importance of data sharing, and contains information on the risks and benefits involved. The brochure was developed by the Clinical Genome Resource (ClinGen), a not-for-profit, National Institutes of Health (NIH)-funded resource dedicated to sharing genetic data, building knowledge, and improving patient care.