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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.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 - 10 of 14
CSER Phase 2 Parental Patient Measures – BASELINE
This baseline measure for parents enables the collection of information on sex, age, language, income, education level, insurance status, country of origin, access to care, health literacy, subject
CSER Phase 2 Parent Decliner Survey
This survey for study decliners captures demographic and insurance status information and elicits information about why parents declined to enroll their child in the study such as privacy concerns,
Preferences for the Return of Pediatric Biobank Results Survey
Christensen and colleagues developed a survey to enable parents of pediatric patients to set preferences for return of individual results from research on pediatric biobank samples based on disease
CSER Phase 2 Patient Reported Utility (PRU) of Clinical Sequencing Survey
The Patient Reported Utility (PRU) of Clinical Sequencing Survey asks participants to rate how useful they find nineteen outcomes of genome sequencing on a scale ranging from 1 (not at all useful)
CSER Phase 2 Patient-Initiated Actions Attributable to Genomic Testing (PIA) Survey
The Patient-Initiated Actions Attributable to Genomic Testing Survey, developed by the Clinical Utility, Health Economics, and Policy (CUHEP) working group, asks adult patients to report whether th
CSER Phase 2 Follow Through on Medical Actions Attributable to Genomic Testing (MRA) Survey
The Follow Through on Medical Actions Attributable to Genomic Testing Survey, developed by the Clinical Utility, Health Economics, and Policy (CUHEP) working group, measures whether parents of pedi
CSER Information Seeking Measure
The CSER Information Seeking Measure (two versions) is a single-item measure that assesses the sources of information that patients think they will be likely to use to obtain further information ab
CSER Phase 1: The Baylor Advancing Sequencing into Childhood Cancer Care (BASIC3) Study Brochure
The study brochure for the BASIC3 Study, funded by the NHGRI, is an easy to read description of the study purpose, eligibility requirements, and study procedures.
CSER Phase 2 Provider Return of Results Follow-up #1 Survey
CSER 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
CSER Phase 2 Provider Return of Results Follow-up #2 Survey
CSER 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