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Research Tool
Educational Video on Expanded Carrier Screening (ECS) & Autosomal Recessive (AR) Disorder
Conjin and colleagues created this brief educational video on autosomal recessive inheritance, the expanded carrier screening (ECS) test, reproductive options, and a description of MPS III (… -
Research Tool
Educational Text on Expanded Carrier Screening (ECS) & Autosomal Recessive (AR) Disorder
Conjin and colleagues created this brief online written educational summary on autosomal recessive inheritance, the expanded carrier screening (ECS) test, reproductive options, and a description of… -
Research Tool
Genetic Knowledge Test (Carrier Status, Autosomal Recessive Disorders, Expanded Carrier Screening)
Conjin and colleagues created this brief knowledge test to measure the effect of an educational video compared to an educational text. The educational text, video, and questionnaire used in this… -
Research Tool
Genomic Results Educational Video for Adolescents
This 17 minute video provides adolescents with information on the meaning, limitations, and potential benefits and risks of receiving positive and negative genomic test results. -
Research Tool
Whole Genome Sequencing and You
“Whole Genome Sequencing and You” is a 10-minute educational animated video about whole-genome sequencing for research participants, patients, and the general public. -
Research Tool
CSER Phase 2 Adult Patient Measures – BASELINE
This baseline measure for adults enables the collection of information on sex, age, language, income, education level, insurance status, country of origin, access to care, health literacy, subjective… -
Research Tool
CSER Phase 1: Informed Consent Form and HIPAA Authorization - PediSeq: The Pediatric Genetic Sequencing Project
The purpose of PediSeq: The Pediatric Genetic Sequencing Project was to identify best practices for educating patients about exome and genome sequencing, determining the sequencing data relevent to… -
Research Tool
Interview Guide: Diverse Parental Perspectives of the Social and Educational Needs for Expanding Newborn Screening through Genomic Sequencing
Timmins and colleagues created this semi-structured interview guide to explore parents' perspectives on expanded newborn screening through genomic sequencing. Questions explore parent's… -
Research Tool
How Does Genetic Ancestry Testing Affect Perceptions of Race? Conjoint Survey Instrument
The Conjoint Survey Instrument is a survey instrument developed for the study “How Does Genetic Ancestry Testing Affect Perceptions of Race?” The study explores how respondents make racial… -
Research Tool
Expanded Carrier Screening Questionnaire
Conjin and colleagues created this questionnaire to assess genetic knowledge, the perceived severity of MPS III (Sanfilippo disease), perceived risk, and attitudes toward expanded carrier screening (…