Forum · Harvard Precision Medicine 2015- Patient Driven and A Future Where Genetics Directs our Sleep Apnea Treatments?

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[-] SusanR +0 points · over 2 years ago

On June 24-25, 2015 Harvard Medical School sponsored an exciting conference that brought patients, parents, clinicians, informaticians, regulators, researchers and lawyers together to discuss the opportunities and challenges related to precision medicine (https://cbmi.med.harvard.edu/events/precision-medicine-2015-patient-driven). This rapidly developing area of medicine aims to match specific treatments to each person, using a variety of information such information on genetic background, environment, and disease characteristics. The idea is to use a variety of information to make sure that the chosen treatment for any given disease in each person is directed at the right targets--maximizing benefit and reducing harm. For example, in the future, a patient with a new diagnosis of sleep apnea might not just be offered CPAP, but undergo additional tests to determine what exactly is causing his or her sleep apnea--does he or she have relatives with sleep apnea? are there genes that can be targeted to improve sleep apnea? are there very specific aspects of anatomy or breathing that can be specifically targeted with a drug or customized device?

To fully harness the power of this approach, there is a need to bring together vast amounts of data (genetic and clinical data) and use sophisticated tools to best identify how to target those molecules or physiological processes that need to be fixed to improve health. Although there are incredible opportunities to use vast amounts of biological data, the meeting participants also discussed some of the ethical and regulatory barriers to getting all of the information together. Megan O'Boyle from the Phelan-McDermid Syndrome patient PCORNet network spoke about her campaign to bring her daughter's records into research registeries and the blocks she has experienced in easily accessing those records. There seemed to be consensus that the eloquent voices of parents and patients like Megan will help our research and health systems to develop better ways to protect privacy while making sure the data are being used to benefit patients.

I hope that with MyApnea and the Sleep Apnea Patient Centered Outcomes Network we will also importantly contribute to the dialogue on how to gather and use large amounts of information to develop "precision" treatments. We are just building MyApnea but I believe the potential is huge for patients with sleep apnea to benefit from precision medicine. How can we build this better?

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