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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.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 29 Research Tools
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CSER Phase 1: NCGENES Incidental Information Brochure
The brochure, developed by North Carolina Genomic Evaluation by Next-generation Exome Sequencing (NCGENES), describes Whole Exome Sequencing (WES) and six types of non-medically actionable incident
Research Population: Adults -
CSER Phase 1: NCGENES "What can I learn from whole genome sequencing" Brochure
The brochure, developed by North Carolina Genomic Evaluation by Next-generation Exome Sequencing (NCGENES), includes information about whole exome sequencing (WES), the three types of incidental in
Research Population: Adults -
CSER Phase 1: MedSeq Trials Published Study Protocol
Year: 2014This published study protocol for the MedSeq trials includes a description of the study design; recruitment, enrollment, and sample size plan; patient exclusion/inclusion criteria; and process of i
Research Population: Physicians, Adults -
CSER Phase 1: The Institutional and Professional Impact of Genomic Sequencing in Cancer Care Study Protocol
Year: 2014This document is the study protocol of the Institutional and Professional Impact of Genomic Sequencing in Cancer Care study.
Research Population: Physicians -
CSER Phase 1: The use of sequencing to guide the care of cancer patients (CanSeq) study protocol
Year: 2015This document is the Use of Sequencing to Guide the Care of Cancer Patients study protocol.
Research Population: Adults -
CSER Phase 1: Personalized Oncology Through High-throughput Sequencing:
MI-ONCOSEQ Study Protocol
Year: 2015The Personalized Oncology Through High-throughput Sequencing: MI-ONCOSEQ (Michigan Oncology Sequencing Center) (formerly known as “Personalized Medicine Based on Molecular Profiling of Patients wit
Research Population: Adults -
CSER Phase 1: Personalized Medicine Based on Molecular Profiling of Pediatric and Young Adult Patients with Cancer Study Protocol
Year: 2015The Personalized Medicine Based on Molecular Profiling of Patients with Cancer implements a mechanism for patients who have advanced or refractory cancer to undergo tumor sequencing, sequence analy
Research Population: Adults -
CSER Phase 1: The Baylor Advancing Sequencing into Childhood Cancer Care (BASIC3) Study Brochure
Year: 2012The study brochure for the BASIC3 Study, funded by the NHGRI, is an easy to read description of the study purpose, eligibility requirements, and study procedures.
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] -
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]