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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.
1 - 6 of 6 Research Tools
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CSER Phase 1: Informed Consent Form and HIPAA Authorization - PediSeq: The Pediatric Genetic Sequencing Project
Year: 2013The 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 Population: Parents, Children -
CSER Phase 1: Informed Consent Document - Genomic Diagnosis in Children with Developmental Delay
Year: 2014This informed consent document for parents and minors in the Genomic Diagnosis in Children with Developmental Delay study includes standard consent language plus consent to storage of specimens for
Research Population: Adults, Children -
CSER Phase 1: Assent Form: (Ages 7-14) 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 7 - 14 year old relatives of NCGENES study participants with a genetic test
Research Population: Children -
CSER Phase 1: Baylor Advancing Sequencing into Childhood Cancer Care (BASIC3) Germline Sequencing Form
Year: 2014This form is for physicians to record demographic and clinical information about a patient to facilitate laboratory interpretation of whole exome sequencing results.
Research Population: Adults, Children -
Interview Guide, Moral Views of Gene Drive Technology Experts
Year: 2021This semi-structured interview guide is intended for use with gene drive technology (GDT) experts. It was developed using ethical arguments identified by the authors via literature review.
Research Population: Experts -
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]