CSER Phase 2 Organizational Readiness to Change Assessment

The CSER Organizational Readiness to Change Assessment measures the readiness of healthcare systems to implement clinical sequencing. It is comprised of 19 items from an existing measure, the ORCA (Organizational Readiness to Change Assessment, and should be administered at 0-8 weeks since study initiation to six to ten executives, administrators, managers, or clinicians at each site participating in your project.

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 pediatric patients took actions (such as sharing the results with healthcare providers) after receiving positive or negative findings on their child's genetic test.

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 they took any actions following the return of genetic test results, including making changes to their own or their child's health care, lifestyle, or insurance.

Questionnaire: “Data in question. ELSI Challenges in Biobank-based Research”

Goisef and colleagues developed a survey for professionals working in research-based biobanks in Europe that assess their satisfaction with current ELSI-related procedures. Topics assessed include: collaboration and data sharing with industrial partners, secondary uses of participant data, and recontacting participants. There are 25 questions in this survey.

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 preventability and severity.The survey also enables participants to exclude mental health, developmental, childhood degenerative, and adult-onset disorders. During the course of this study, participants also reviewed a hypothetical results report with conditions divided into categories based on preventability and severity and were offered the opportunity to revise their preferences.

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