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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.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 12 Research Tools
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The Colored, Eco-Genetic Relationship Map (CEGRM)
Year: 2001Kenen and Preters designed the Colored Ecological and Genetic Relational Map (CEGRM), a pictoral map used to organize information about client relationships with biological and non-biological kin,
Research Population: AdultsValidation(s):Peters, J. A., Kenen, R., Giusti, R., Loud, J., Weissman, N., & Greene, M. H. (2004). Exploratory study of the feasibility and utility of the colored eco-genetic relationship map (CEGRM) in women at high genetic risk of developing breast cancer. Am J Med Genet Part A, 130A, 258–264.
Peters, J. A., Hoskins, L., Prindiville, S., Kenen, R., & Greene, M. H. (2006). Evolution of the colored eco-genetic relationship map (CEGRM) for assessing social functioning in women in hereditary breast-ovarian (HBOC) families. Journal of Genetic Counseling, 15(6), 477-489.
Contact: [email protected] -
CSER Phase 1: Tumor Mutation Explanation Card
Year: 2012This short explanation card defines a tumor mutation and describes what parents of pediatric patients can expect from a tumor mutation report.
Research Population: Parents -
CSER Phase 1: Inherited Mutation Explanation Card
Year: 2012This short explanation card defines an inherited mutation and describes the information that parents might find on their child's inherited mutation report.
Research Population: Parents -
CSER Phase 1: X-Linked Explanation Card
Year: 2013This short explanation card defines carrier status for X-linked recessive conditions.
Research Population: Parents -
CSER Phase 1: Revised Carrier Status Explanation Card
Year: 2012This hort explanation card defines carrier status for recessive genetic conditions.
Research Population: Parents -
CSER Phase 1: Incidental Findings Choice Document
Year: 2015This questionnaire enables research participants to review categories of incidental findings that might be revealed during an exome test and select the categories of results that they would like to
Research Population: Adults -
CSER Phase 1: Baylor Advancing Sequencing into Childhood Cancer Care (BASIC3 Study)
Parent QuestionnaireThis questionnaire for parents was developed for the BASIC3 study.
Research Population: Parents -
CSER Phase 1: Baylor Advancing Sequencing into Childhood Cancer Care (BASIC3 Study) Family History Questionnaire
This questionnaire was developed for the BASIC3 study. It collects a detailed family history of cancer from parents about their child.
Research Population: Parents -
CSER Phase 1: Baylor Advancing Sequencing into Childhood Cancer Care (BASIC3 Study)
Child Health QuestionnaireThis questionnaire was developed for use in the BASIC3 study. It collects demographic and health information from parents about their child.
Research Population: Parents -
Expanded Carrier Screening Questionnaire
Year: 2020Conjin and colleagues created this questionnaire to assess genetic knowledge, the perceived severity of MPS III (Sanfilippo disease), perceived risk, and attitudes toward expanded carrier screening
Research Population: AdultsContact: [email protected]