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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.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 11
Instrument for assessing mass media reporting of disease-related genetic discoveries
Instrument for assessing mass media reporting of disease-related genetic discoveries is a 38-item tool for evaluating the quality and balance of media stories reporting genetic discoveries related
- Mountcastle-Shah, E., Tambor, E., Bernhardt, B. A., Geller, G., Karaliukas, R., Rodgers, J. E., & Holtzman, N. A. (2003). Assessing mass media reporting of disease-related genetic discoveries: Development of an instrument and initial findings. Science Communication, 24(4), 458-478.
Genetic Literacy Fast Test (GeneLiFT)
The Genetic Literacy Fast Test (GeneLiFT) is a self-administered genetic literacy test for individuals who intend to undergo genetic screening with return of results.
- Rasouly, M. H., Cuneo, N., Marasa, M., DeMaria, N., Chatterjee, D., Thompson, J. J., Fasel, D. A., Wynn, J., Chung, W., Appelbaum, P., Weng, C., Bakken, S., & Gharavi, A. G. (2020). GeneLiFT: A novel test to facilitate rapid screening of genetic literacy in a diverse population undergoing genetic testing. Journal of Genetic Counseling, 00, 1–13.
CSER Phase 1: Tumor Mutation Explanation Card
This short explanation card defines a tumor mutation and describes what parents of pediatric patients can expect from a tumor mutation report.
CSER Phase 1: Inherited Mutation Explanation Card
This short explanation card defines an inherited mutation and describes the information that parents might find on their child's inherited mutation report.
CSER Phase 1: X-Linked Explanation Card
This short explanation card defines carrier status for X-linked recessive conditions.
CSER Phase 1: Revised Carrier Status Explanation Card
This hort explanation card defines carrier status for recessive genetic conditions.
CSER Phase 1: MedSeq Trials Published Study Protocol
This published study protocol for the MedSeq trials includes a description of the study design; recruitment, enrollment, and sample size plan; patient exclusion/inclusion criteria; and process of i
CSER Phase 1: The use of sequencing to guide the care of cancer patients (CanSeq) study protocol
This document is the Use of Sequencing to Guide the Care of Cancer Patients study protocol.
CSER Phase 1: Personalized Oncology Through High-throughput Sequencing:
MI-ONCOSEQ Study Protocol
The Personalized Oncology Through High-throughput Sequencing: MI-ONCOSEQ (Michigan Oncology Sequencing Center) (formerly known as “Personalized Medicine Based on Molecular Profiling of Patients wit
CSER Phase 1: Personalized Medicine Based on Molecular Profiling of Pediatric and Young Adult Patients with Cancer Study Protocol
The Personalized Medicine Based on Molecular Profiling of Patients with Cancer implements a mechanism for patients who have advanced or refractory cancer to undergo tumor sequencing, sequence analy