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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.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 27 Research Tools
-
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: ClinSeq Study Brochure
Year: 2015This recruitment brochure for the ClinSeq Study provides details about the study rationale, the risks and benefits associated with participation, and the enrollment procedure.
Research Population: Adults -
CSER Phase 1: CanSeq Study Brochure
Year: 2015This recruitment brochure for the CanSeq Study provides details about the study rationale and information designed to help adults weigh the risks and benefits associated with participation.
Research Population: Adults -
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: NCGENES Study Brochure
The study brochure for the North Carolina Genomic Evaluation by Next-generation Exome Sequencing (NCGENES) study includes information on what whole exome sequencing is, why the study is being condu
Research Population: Adults -
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: 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]