Protocol - Program Evaluation: Patient Uptake of Genetic Services
The reach dimension of Reach Effectiveness Adoption Implementation and Maintenance (RE-AIM) includes a four-item checklist used to summarize the characteristics of patients who participate in the uptake of services. Genetic service programs or investigators are expected to report these details when describing patient uptake of genetic services.
This protocol is for Implementation Science purposes and should be used when reporting uptake of genetic testing or evaluating an intervention to increase access and uptake of genetic testing that is planned/being conducted. There are various ways to collect this type of information (e.g., medical chart or electronic medical record, other program records, patient self-report), and the method of data collection should be reported.
1. Record the actual number and percent of persons excluded from your study.
2. Report the percent of eligible participants who agree to participate in your study.
3. Compare differences between those participating and those not participating on illness status, sociodemographics, geography, and other key variables.
4. Record reasons that participants refused to participate in the study.
Personnel and Training Required
|Specialized requirements for biospecimen collection||No|
|Average time of greater than 15 minutes in an unaffected individual||No|
Mode of Administration
Patients who participated in genetic testing
The checklist was developed and successfully used by the Implementation Science Team at the National Cancer Institute (NCI) Division of Cancer Control and Population Sciences (DCCPS). It is widely used.
|caDSR Common Data Elements (CDE)||Genomic Medicine Implementation Patient Genetic Testing Uptake Assessment Text||7408776||CDE Browser|
Process and Review
Protocol Name from Source
Reach Effectiveness Adoption Implementation and Maintenance (RE-AIM) Checklist for Study or Intervention Planning
National Cancer Institute. (2012). Reach Effectiveness Adoption Implementation and Maintenance (RE-AIM) Model Checklist for Study or Intervention Planning Available at http://www.re-aim.org/resources-and-tools/measures-and-checklists/
Glasgow, R. E., & Estabrooks, P. E. (2018). Pragmatic applications of RE-AIM for health care initiatives in community and clinical settings. Preventing Chronic Disease: Public Health Research, Practice, and Policy, 15(E02), 1–7.
Glasgow, R. E., Nelson, C. C., Strycker, L. A., & King, D. K. (2006). Using RE-AIM metrics to evaluate diabetes self-management support interventions. American Journal of Preventative Medicine, 30(1), 67–73.
Wu, R. R., Myers, R. A., McCarty, C. A., Dimmock, D., Farrell, M., Cross, D., Chinevere, T. D., Ginsburg, G. S., & Orlando, L. A. (2015). Protocol for the “Implementation, adoption, and utility of family history in diverse care settings” study. Implementation Science, 10, 163.
Wu, R. R., Myers, R. A., Sperber, N., Voils, C. I., Neuner, J., McCarty, C., Haller, I. V., Harry, M., Fulda, K. G., Cross, D., Dimmock, D., Rakhra-Burris, T., Buchanan, A. H., Ginsburg, G. S., & Orlando, L. A. (2019). Implementation, adoption, and utility of family health history risk assessment in diverse care settings: Evaluating implementation processes and impact with an implementation framework. Genetics in Medicine, 21(2), 331–338.
|Variable Name||Variable ID||Variable Description||dbGaP Mapping|
Program Evaluation: Patient Uptake of Genetic Services
September 10, 2020
A checklist used to evaluate uptake of genetic services and testing and the characteristics (e.g., number eligible, and representativeness) of patients willing to participate in genetic testing.
The reach dimension of the Reach Effectiveness Adoption Implementation and Maintenance (RE-AIM) framework is used to evaluate an intervention. Reach is synonymous with uptake. For genetic services, reach includes the number and characteristics of the individuals who are offered genetic services and elect to proceed with genetic counseling and testing.
Reach, genetic counseling, genetic testing, genomic testing, genetic services, Reach Effectiveness Adoption Implementation and Maintenance, RE-AIM, Implementation Science