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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.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 - 36 of 36 Research Tools
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Gene Modification Therapy Scenarios for Parents of People with Down Syndrome
Year: 2018Michie and Allyse developed five scenarios that describe existing and hypothetical interventions for symptoms of Down syndrome (DS): 1) prenatal physical intervention, 2) prenatal cognitive interve
Research Population: Parents -
The Parental Personal Utility Scale (Parent PrU)
Year: 2024The Personal Utility Scale (PrU) asks participants to rate how useful they find nineteen outcomes of genome sequencing on a scale ranging from 1 (not at all useful) to 7 (extremely useful).
Research Population: Adults, ParentsValidation(s):Turbitt, E., Kohler, J. N., Brothers, K. B., Outram, S. M., Rini, C., Sahin-Hodoglugil, N., Leo, M. C., & Biesecker, B. B. (2024) The Parent PrU: A measure to assess personal utility of pediatric genomic results. Genetics in Medicine, 16(1), Article 100994.
Contact: [email protected] -
Questionnaire: “Data in question. ELSI Challenges in Biobank-based Research”
Year: 2019Goisef and colleagues developed a survey for professionals working in research-based biobanks in Europe that assess their satisfaction with current ELSI-related procedures.
Research Population: ResearchersContact: [email protected] -
CSER Phase 1: Assent Form: (Ages 15-17) Relatives of a Study Subjects - NCGENES: A Next-Generation Sequencing Platform for Genetic Diagnosis and Research
Year: 2014This assent form from the NCGENES: A Next-Generation Sequencing Platform for Genetic Diagnosis study is designed for the adolescent (aged 15-17) relatives of NCGENES study participants with a genet
Research Population: Adolescents -
The Genetics of Alzheimer's (Video)
Year: 2010This short (3 minute) English language video provides information on Alzheimer's disease, including its genetic component.
Research Population: Adults, AdolescentsContact: [email protected] -
Genomic Results Educational Video for Adolescents
Year: 2019This 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 Population: AdolescentsContact: [email protected]