In an effort to study the interactions between genomics and Parkinson’s disease, Cleveland Clinic has joined the ongoing efforts of 23andMe, a leading personal genetics company, to recruit Parkinson’s patients to participate in research by contributing their DNA to a research database and completing online surveys about their health.
The project is part of Cleveland Clinic’s personalized healthcare initiative, and supports the Center for Personalized Healthcare’s goal to drive discoveries that allow medical professionals to better predict risk for disease and response to therapies, with the ultimate goal to improve patient care.
The goal of this collaborative research effort – which also has support from the Michael J. Fox Foundation, the National Parkinson Foundation and the Parkinson's Institute – is to discover how genes and the environment influence Parkinson's disease.
Patients who volunteer for the study will be asked to provide a saliva sample for DNA analysis and agree to participate in online surveys about their experience with Parkinson’s. 23andMe hopes to enroll 10,000 participants total; Cleveland Clinic expects to enroll about 1,000 patients toward this goal.
Participation is free and voluntary. Those who take part in the study will be identified by a unique code, not by their names, in order to protect their privacy. Participants can choose to receive a report summarizing the genes identified in their DNA, though these findings will not be placed in their medical record.
To facilitate participation in the registry, Cleveland Clinic has detailed information and dedicated computer portals set up at locations where Parkinson’s patients are most likely to be visiting, including main campus in Cleveland and the Lou Ruvo Center for Brain Health in Las Vegas. Two additional locations, Cleveland Clinic’s Lakewood Hospital (Lakewood, Ohio) and Cleveland Clinic Florida (Weston, Fla.), will be enrolling patients as well. Patients can also email Cleveland Clinic at firstname.lastname@example.org or 23andMe at email@example.com for more details or to sign up.
For more information about the research study, visit www.23andme.com/pd/.
Genetics Knowledge & Needs Assessment Survey of Primary Care Physicians at an Academic Medical Center
The overall aim of this study was to assess practicing primary care physicians’ levels of knowledge regarding PHC informed by genetics, genomics, self-efficacy, and educational needs.
Design: 120 primary care physicians (PCPs) currently practicing in the Cleveland Clinic’s Medicine Institute completed a validated web-based survey to identify knowledge gaps, levels of self-efficacy impacting clinical behaviors and the adoption of PHC strategies and technologies informed by genetics and genomics.
Results: Of the 120 providers eligible to take this survey, 91 responded and completed the survey (response rate of 75%, 32% of respondents were in practice at a main campus/academic medical center location, 60% from a family health center, and 8% from a regional hospital setting).
When surveyed about their comfort with using general genetics concepts (including family history) in general practice, the results indicate that the respondents felt comfortable with collecting a comprehensive family history, identifying patients at increased risked for disease, and referring to genetic professionals for further clinical evaluation.
However, PCPs reported low self-efficacy regarding counseling patients about genetic services, screening and testing options, and bioethical issues such as genetic discrimination. The results also indicated that respondents would like to learn more about advanced concepts related to personalized healthcare (concepts in personalized healthcare and genetics, personal genomics, pharmacogenomics, and privacy issues).
Conclusion: While the results indicate that there are knowledge gaps among Cleveland Clinic primary care physicians’ regarding PHC informed by genetics and genomics, the results also indicate that physicians are willing to learn about advanced PHC concepts by attending targeted live educational interventions. In addition, analysis of preference of learning venues for continuing education indicated that approximately 80% of the sample population is interested in conferences, and greater than 80% have no interest in podcasts, newsletters, or mobile applications.