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Research Tool
Common survey items, eMERGE participant survey at 6-12 months post disclosure
This survey covers disclosure of genetic test results to family members, follow up care, behavior changes, and other topics. It can be administered using REDCap. -
Research Tool
CSER Phase 1: Baylor Advancing Sequencing into Childhood Cancer Care (BASIC3 Study)
Parent QuestionnaireThis questionnaire for parents was developed for the BASIC3 study. It collects demographic and health information, measures numeracy and genetic literacy, and records parent preferences for making… -
Research Tool
Common survey items, eMERGE participant survey at 0-1 month post disclosure
This survey covers disclosure of genetic test results to family members, plans for follow up care, plans for behavior changes, demographic information, and other topics. It can be administered using… -
Research Tool
CSER Phase 2 Adult Decliner Survey
This survey for study decliners captures demographic and insurance status information and elicits information about why participants declined to join the study such as privacy concerns, refusal to… -
Research Tool
CSER Phase 1: The Baylor Advancing Sequencing into Childhood Cancer Care (BASIC3) Study Brochure
The 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. It also offers a basic explanation… -
Research Tool
CSER Phase 2 Parent Decliner Survey
This survey for study decliners captures demographic and insurance status information and elicits information about why parents declined to enroll their child in the study such as privacy concerns,… -
Research Tool
CSER Phase 1: Consent Form - CanSeq, The use of sequencing to guide the care of cancer patients study
This consent form for the CanSeq study included permission to perform genetic tests on tissue specimens that had already been collected and stored as part of clinical care or other research studies… -
Research Tool
CSER Information Seeking Measure
The CSER Information Seeking Measure (two versions) is a single-item measure that assesses the sources of information that patients think they will be likely to use to obtain further information… -
Research Tool
(4) Narrated Slideshow Videos: Introduction to Gene Drive Technologies for Lay Audiences
Schairer and colleagues created 4 Narrated Slideshow Videos that provide an introduction to gene drive technologies for lay audiences. Each narrated video is between 5-6 minutes. Slide Show 1, "… -
Research Tool
CSER Phase 2 - Feelings about Genomic Testing Results (FACToR) – Parent
This post-return of child genetic test results survey for parents assesses the psychosocial impact of receiving genomic findings by measuring how much participants had specific feelings such as…