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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.
11 - 20 of 28 Research Tools
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CSER Phase 1: Adult/parent consent with assent form - Personalized Medicine Based on Molecular Profiling of Patients with Cancer
Year: 2014This consent/ assent form for adults, adolescents, and parents of minors in the Personalized Medicine Based on Molecular Profiling of Patients with Cancer study includes consent to the use of tumor
Research Population: Adults, Adolescents, Parents -
CSER Phase 1: Parental Consent for Child to Participate in a Research Study, Minor Subjects- Relatives of Study Subject - NCGENES: A Next-Generation Sequencing Platform for Genetic Diagnosis and Research
Year: 2014This parental consent form from the NCGENES: A Next-Generation Sequencing Platform for Genetic Diagnosis study is designed for the minor relatives of NCGENES study participants that received a gene
Research Population: Parents -
CSER Phase 1: Parent Consent Form - Incorporation of Genomic Sequencing into Pediatric Cancer Care Study
Year: 2016This parent consent form was approved by the Institutional Review Board for the Baylor College of Medicine and Affiliated Hospitals for use in the Incorporation of Genomic Sequencing into Pediatric
Research Population: Parents -
CSER Phase 1: Patient Consent Form - Incorporation of Genomic Sequencing into Pediatric Cancer Care Study
Year: 2016This patient consent form was approved by the Institutional Review Board for the Baylor College of Medicine and Affiliated Hospitals for use in the Incorporation of Genomic Sequencing into Pediatri
Research Population: Parents -
CSER Phase 1: Parent Consent Form - Incorporation of Genomic Sequencing into Pediatric Cancer Care Study
Year: 2016This parent consent form was approved by the Institutional Review Board for the Baylor College of Medicine and Affiliated Hospitals for use in the Incorporation of Genomic Sequencing into Pediatric
Research Population: Parents -
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] -
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] -
CSER Phase 2 Provider Return of Results Follow-up #1 Survey
Year: 2018CSER Phase 2 Provider Return of Results Follow-up #1 Survey is administered 0-6 weeks post-return of results to providers of research participants that were returned positive, negative, VUS, and se
Research Population: Physicians -
CSER Phase 2 Provider Return of Results Follow-up #2 Survey
Year: 2018CSER Phase 2 Provider Return of Results Follow-up #2 Survey is administered at 5-7 months post-return of results, regardless of whether the provider has completed the CSER Phase 2 Provider Return o
Research Population: Physicians -
CSER Phase 1: Physician Consent Form - Incorporation of Genomic Sequencing into Pediatric Cancer Care Study
Year: 2016This physician consent form was approved by the Institutional Review Board for the Baylor College of Medicine and Affiliated Hospitals for use in the Incorporation of Genomic Sequencing into Pediat
Research Population: Physicians