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201 - 210 of 215 Research Tools
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CSER Phase 1: Baylor Advancing Sequencing into Childhood Cancer Care (BASIC3 Study)
Parent QuestionnaireThis questionnaire for parents was developed for the BASIC3 study.
Research Population: Parents -
CSER Phase 1: Baylor Advancing Sequencing into Childhood Cancer Care (BASIC3 Study) Family History Questionnaire
This questionnaire was developed for the BASIC3 study. It collects a detailed family history of cancer from parents about their child.
Research Population: Parents -
CSER Phase 1: Baylor Advancing Sequencing into Childhood Cancer Care (BASIC3 Study)
Child Health QuestionnaireThis questionnaire was developed for use in the BASIC3 study. It collects demographic and health information from parents about their child.
Research Population: Parents -
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: 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 -
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 -
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] -
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 -
Newborn Whole Genome Sequencing Scenarios
Year: 2013Goldenberg, Dodson, Davis, & Tarini created two scenarios to assess parents’ interest in whole-genome sequencing (WGS) for newborns.
Research Population: ParentsContact: [email protected] -
Semi-Structured Interview Guide: Storage and Use of Residual Newborn Bloodspots
Year: 2014Botkin and colleagues created this semi-structured interview guide to uncover what prospective parents are interested in knowing about the practice of retaining residual newborn screening bloodspot
Research Population: ParentsContact: [email protected]