The Coriell Personalized Medicine Collaborative is a research study that employs an evidence-based approach to determine the utility of personal genome information in clinical decision-making. The CPMC also aims to discover genetic variants that affect drug toxicity and efficacy, as well as to discover presently unknown genes or genetic variants that elevate a person's risk of cancer and other complex diseases.
This is a forward-thinking, collaborative effort involving volunteer study participants, physicians, scientists, ethicists, genetic counselors and information technology experts whose goal is to better understand the impact of personalized, or genome-informed, medicine and guide its ethical, legal and responsible implementation. The study seeks to initially enroll 10,000 participants.
How Can Medical Professionals Participate?
Involvement of medical professionals is essential to improving our understanding of the efficacy of personalized medicine and to the integration of personalized medicine into clinical care. As a medical professional, you can participate in the CPMC in the following ways:
- You can enroll as a participant in the study.
- If you have a patient who has shared their CPMC results with you, you can provide valuable feedback regarding if and how you incorporated your patient's genomic information into your health management and prevention plans.
- You can learn more about the role of genomics in disease by attending information sessions hosted by CPMC physician advisors and CPMC genetic counselors reviewing genetic variants released by the study.
In the future, we may invite you to participate in outcomes research by completing questionnaires that focus on if and how you have used the genomic information shared with you by your CPMC participant patients. These questionnaires may also ask for your opinions on issues related to the integration of genomic information into clinical practice.
How Can Participation Benefit My Patients?
At this time, it is unknown if and how genomic information will help individuals improve their health outcomes. The CPMC aims to answer this question and we are hoping that you as the healthcare provider of a CPMC participant can share your insights. Your patients may benefit from participation in this research study by utilizing personalized risk assessments based on genetic variants, medical history, family history, and lifestyle, to make changes to their lifestyle or behavior and by sharing this information with you for potential use in healthcare decisions.
What Does Participation Involve for My Patients?
In order to participate in the study, your patients are required to attend a Coriell Personalized Medicine Collaborative informed consent session which will provide them with information about the purpose of the study, what will be required of them as a study participant, and the risks and benefits of the study. Following the informed consent session your patients will have the opportunity to read and sign the consent form and submit a saliva sample. As part of their participation in the study, your patient will create a personal CPMC account through a secure online portal and complete an online medical, lifestyle and family history questionnaire. As a participant, your patient will be asked annually to update their contact information, as well as their family, lifestyle and medical history information through this secure browser. In the future, your patient will be asked to complete various questionnaires regarding the impact their genetic results have had on their health. As a participant, your patient will also be informed of other studies for which they are eligible to participate. Participation in the CPMC study is free.
Where Can I Get Answers to Questions About My Patient's Genetic Results?
In the Genetic Education section of the CPMC website you can access general summaries on a variety of topics related to the study, including: reviews of basic genetics, inheritance, non-genetic causes of disease, an introduction to genomics and medicine, a review of cancer genetics, and an explanation of how to interpret relative risk, the format that your patient's risk will be presented in.
In the Health Conditions and Drug Response section of the CPMC website you can find a patient-friendly summary of each health condition for which genetic results are currently available. Each summary discusses the health condition, its genetic and non-genetic causes, incidence, diagnosis, testing and treatment options, and how the genetic risk for the condition is inherited. At the end of each health condition summary you will find links to additional resources.
At the end of each health condition summary, you will find information about each genetic variant that has been released to study participants. This information will include the possible variant results, the frequency of each variant result, and the relative risk of disease for each variant result. Possible results are presented for Caucasian individuals; however, when data is available, participant results will be race/ethnic specific.
Access to educational material, including the health condition and gene variant information, is available to the general public and does not require a CPMC login. You will be able to view this general information whether or not you have received an invitation to view the results for a particular patient.
The Coriell Personalized Medicine Collaborative has board-certified genetic counselors that are here to talk with you and your patients about the genetic information that may be learned as a result of participating in the study. To reach a genetic counselor by telephone, please log onto your CPMC account and select "Contact a CPMC Genetic Counselor" or call 1-888-580-8028 to reach the CPMC Hotline.