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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.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 51 Research Tools
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CSER Phase 1: Inherited Mutation Explanation Card
Year: 2012This short explanation card defines an inherited mutation and describes the information that parents might find on their child's inherited mutation report.
Research Population: Parents -
CSER Phase 1: X-Linked Explanation Card
Year: 2013This short explanation card defines carrier status for X-linked recessive conditions.
Research Population: Parents -
CSER Phase 1: Revised Carrier Status Explanation Card
Year: 2012This hort explanation card defines carrier status for recessive genetic conditions.
Research Population: Parents -
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 -
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] -
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 -
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.
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