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211 - 215 of 215 Research Tools
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Attitudes of Parents of Sickle Cell Anemia (SCA) Affected Children Toward Prenatal Diagnosis of SCA Survey
Year: 2011Wonkam and colleagues designed this survey to gather information about how Cameroonian parents with SCA-affected children feel towards prenatal diagnosis and termination of an affected pregnancy.
Research Population: ParentsContact: [email protected] -
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 -
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 -
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]