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PATIENTS’ GENOME INFORMATION TO BE INCLUDED IN ELECTRONIC MEDICAL RECORDS

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Amazing Collaboration between Coriell Personalized Medicine Collaborative  and Ohio State University which will bring personal genomic information closer to the individuals via the health care system.  Congrats to both sides for this great accomplishment.

FOR IMMEDIATE RELEASE

February 8, 2011

PATIENTS’ GENOME INFORMATION TO BE INCLUDED IN ELECTRONIC MEDICAL RECORDS

Coriell Personalized Medicine Collaborative to bring Genome-Informed Medicine into the Clinic at Ohio State CAMDEN, N.J. – Coriell Institute for Medical Research announced a partnership today in which Ohio State University Medical Center physicians are incorporating genetic risk information into their patients’ electronic medical records, through their participation in the Coriell Personalized Medicine Collaborative® (CPMC®) research study. The goal of the CPMC study is to understand the utility of genome information in patient care and develop best practices for the field. “By providing personal genetic risk data directly to both physicians and their patients, we have a unique opportunity to examine how personalized medicine can be used in the clinic,” said Michael Christman, Ph.D., president and CEO of Coriell. “This is an important step toward effectively integrating genome information into routine medical care.” The Coriell/OSU Medical Center partnership brings together two leaders in the emerging field of personalized medicine: Coriell, a renowned non-profit research institute engaged in the study of human genetic diseases and translation into genome-informed clinical care, and OSU Medical Center, an institute dedicated to saving lives and improving the quality of life by translating scientific discoveries in the lab to a patient’s bedside. The collaboration involves 30-35 Ohio State cardiologists and primary care physicians and 1,800 of their patients who have been diagnosed with congestive heart failure or hypertension. The patients’ genomic information will be entered into their electronic medical records and observations will be made as to how their physicians use the personalized genetic risk information to make clinical care decisions. The study will reveal whether genome-informed medicine has utility in practice, and how likely doctors are to use the information when it is made available to them. “We are providing physicians with the technology and educational tools to deliver care that is customized to the needs of each individual,” said Christman. Congestive heart failure will affect 5.7 million Americans and lead to 300,000 deaths this year. Hypertension affects nearly one-quarter of adults in the nation. As chronic heart disease patients are often treated with multiple medications, personalized medicine can help physicians make the best prescribing decisions and also identify disease risks, resulting in safer and more accurate care for patients. In addition to monitoring physician behavior and knowledge, the impact of genetic counseling on patient behaviors will also be studied. While the CPMC offers genetic counseling to all participants free of charge (via phone and email), the Coriell/OSU Medical Center collaboration requires some participants to attend an in-person genetic counseling session. Participants will be asked to complete a series of surveys regarding the understanding of their risk, knowledge of genetics, what they did after learning of their personalized risk information, and with whom they shared their results. Differences between the two groups will provide insight into the role genetic counselors play as educators in personalized medicine. The executive director of Ohio State’s Center for Personalized Health Care, and a co-investigator on the Coriell/OSU Medical Center partnership, Clay Marsh, MD, recognizes the need to engage patients to become more actively involved in their own healthcare management and sees the Coriell collaboration as that opportunity. “Overall, we want to improve people’s lives through healthcare that is predictive, preventive, personalized and participatory,” said Marsh. ### CONTACT: Coriell Institute for Medical Research Director of Communications & Development Courtney Kronenthal, Ph.D. ckronenthal@coriell.org 856-757-9752 About Coriell Institute and the CPMC research study – Coriell Institute for Medical Research (www.coriell.org) is an internationally known, non-profit, biomedical research institution headquartered in Camden, NJ. Founded in 1953, Coriell is the world’s leading biobank resource for biological materials, home to the Coriell Personalized Medicine Collaborative® (CPMC®) research study, and an active player in the field of induced pluripotent stem cells (iPSCs). The CPMC research study is examining the usefulness of personal genome information in health management. The forward-looking, collaborative effort involves volunteer study participants who submit a small saliva sample for genome analysis, answer online health questionnaires about family history, lifestyle and personal medical history, and in return, receive personal risk assessments for potentially actionable health conditions as well as responses to commonly prescribed medications. Coronary artery disease, lupus, melanoma, age-related macular degeneration, prostate cancer, iron overload, and type 1 and type 2 diabetes are currently reported. Future releases include genetic information related to medication response, such as how patients react to Plavix®, a commonly used drug for prevention of blood clots. Coriell has established partnerships with several hospitals and health service providers, including Cooper University Hospital, Fox Chase Cancer Center, Virtua Health, Helix Health of Connecticut and Ohio State University Medical Center. Launched in December 2007, the study will initially enroll 10,000 participants, and also aims to utilize participants’ medical history and genetic data to discover unknown genetic sites that affect susceptibility to disease and response to medications. For more, visit: http://www.cpmc.coriell.org About OSU Medical Center – Ohio State University Medical Center, located in Columbus, OH, comprises six signature programs focused on cancer, critical care, heart, imaging, neurosciences and transplantation, where each program provides science-based and individually tailored patient care. Ohio State educates a large percentage of the region’s physicians and provides advanced training and continuing education for clinicians. For more, visit: http://www.cphc.osu.edu/ Courtney Kronenthal, Ph.D. Director, Communications & Development Coriell Institute for Medical Research 403 Haddon Avenue Camden, NJ 08103

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Ruby Gadelrab’s answer to Personalized Medicine: What is personalized medicine?

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Personalized medicine is getting the right drug, to the right patient, at the right dose at the right time.  A persons individual genomic information will play a key role in making this possible as the genome can tell you how fast a person can metabolize a drug (dosing)  if there are potential side effects (toxicity), if the individual will be responsive (efficacy) to the drug at all and if they have any sensitivities to the drug.

What is personalized medicine?

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Know Thy Genome, Know Thyself – Coriell Personalized Medicine Collaborative

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During the summer of 2009, I came across a fascinating Genetic Study that I decided to participate in Part 1 of this blog will describe the study and some of its features I particularly liked.  In Part 2, I will share some of my personal experiences in participating in the study.

The Coriell Personalized Medicine Collaborative (CPMC) is a research study with a goal of understanding if personalized genetic information can be used to improve health outcomes.

Participants are asked to contribute a Saliva Sample (by spitting a lot in a plastic tube) which is then screened for genetic variants, which can be attributable to common diseases and predict responses to certain medications.

The participants are also asked to complete an online profile of themselves in which they are asked a series of questions on their lifestyle, family history, current health and medications used.  This information in combination with the test is used to generate a personalized genetic report which is viewable by the participant online, once the results are available.  That’s it – it’s free and it’s really simple.

I wanted to highlight a few of the features of the study that I particularly liked

  • The complex diseases/that are reported on are certain types of cancers, diabetes, heart disease and other multi-factorial conditions.  The key thing that they have in common is that the risk of developing them can all be reduced by changes in behavior , lifestyle or medical management– only conditions which are potentially “actionable’ are reported.
  • Apart from multi-factorial conditions, samples are also screened for genetic variants which can influence how individuals metabolize certain prescription drugs, something that’s definitely useful to know when making treatment decisions.
  • One of my favorite things about the CPMC is the lengths they go to ensure that each participant has the opportunity for a great education in genetics, with up to date easily digestible information. The website gives the user a crash course in Genetics 101, the principles of heredity and a discussion on how genomics knowledge may be useful in making medical decisions.  The sections of the website dedicated to genetic education are excellent at dispelling a number of myths that the public believe about genetics and genomics.  One example is the distinctions made between sporadic cancers, familial cancers and hereditary ones.  When we say “cancer is genetic” many equate that only with hereditary genetics and may have fatalistic misconceptions when learning that they have inherited a ‘cancer gene.’ The explanations are simple, using accessible language and diagrams.
  • Once the results are made available on the website (approx 6 weeks after sample submission) participants are notified by email and then they have several choices.
    • To learn about the condition and what the risks actually mean.
    • To view  the results with a very easy to understand interpretation of what they mean
    • The choice NOT to view each or any of the individual results
    • To get genetic counseling, in person or over the phone before or after viewing the results.  This is a very key part of the study that I believe, differentiates it from some of the commercial ‘Direct to consumer’(DTC) genetic testing companies. It’s particularly important when you consider the ‘fear factor’ that the public currently have with respect to genetic information, particularly when we are talking about complex conditions and disease..
  • The study is ongoing over many years.  Genetic research is constant and every day new genes, are discovered and associated with different diseases.  As this happens this information will be made available to the participants provided they are ‘actionable’ and the participants continue to annually update their online medical and lifestyle profile.   I believe that this continuous engagement of the participants will also play a major role in improving the scientific literacy of the individuals with regards to personalized genomics.
  • Participants have the option to release their anonymous data to non profit or not for profit organizations to use as part of their studies into genetic disease.  Another  great feature of the study,  not only can participants gain more knowledge of their own genomes, but they can also make an active contribution to genetic and disease research which will ultimately benefit future generations.
  • The collaborative nature of this study is again a key differentiator from other commercial DTC entities.  This study brings together thought leading scientific researchers, genetic counselors, IT specialists, hospitals, clinicians, members of the public and many more groups who will all play a key role in advancing personalized genomics initiatives.
  • The ‘online ‘nature of the whole process is a view to the future of what Medicine 2.0 could look like.  A web based interface that enables patients to learn about medical conditions in general, get test results back electronically, learn specifics about their conditions and how to manage them, create and follow treatment plans, interact with their medical practitioners and schedule appointments for treatments without ever leaving their homes.

Once I heard about the CPMC and researched it a little, it didn’t take me long to decide that I wanted to participate. In Future posts I will share with you my 23andme experience as well as some of my results.

I would love to hear from others who decided to take a Personalized Genomics/Medicine test.

For further details on the study please visit

http://cpmc.coriell.org

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