This Study Needs You

Some day in the future, people will be reading about the results of a huge health study that enrolled hundreds of thousands of people of all ages in late 2016 and followed them over a number of years. If the study is as successful as scientists hope, Americans of the future will benefit big-time from its findings — it might save lives and help future generations to age in health. That’s because the study, part of President Obama’s Precision Medicine Initiative, aims to collect data that could link specific lifestyle habits, environmental factors and genetics with particular diseases.

The idea’s simple: Instead of treating every Alzheimer’s or cancer patient the same way, doctors should be able to match treatment to an individual’s DNA; and by figuring out why some people develop diseases and others don’t, we should be able to treat individuals before they get sick.

The study needs you to be involved.

President Obama is asking Americans to give researchers information about what they eat, how often they exercise, whether they sleep through the night, how much they smoke or drink, and other minutia of their lifestyles, as well as their genetic information, and then to undergo health tests at regular intervals. According to the National Institutes of Health, which will conduct the study, the initiative will help scientists develop individualized, custom-tailored medical treatments and prevention for common diseases like Alzheimer’s and diabetes, as well as rare ones.

A Groundbreaking Health Study

The Precision Medicine Initiative Cohort Program will be the largest longitudinal research cohort of its kind ever done. (A longitudinal study is one that collects information from the same group of people, a cohort, over a span of time.) Over three to four years, the NIH plans to enroll one million or more Americans from across the country and of all races, ages, and socioeconomic groups, including people with various health conditions.

The initiative is also notable because along with gathering broad and diverse health, environmental and lifestyle data, it will also collect information about study participants from physical evaluations, specimens such as blood tests, health records, questionnaires and, eventually, from smartphones and other technologies.

“Our plan for data collection is to start small and grow over time, as technology evolves and participants share more information,” says Gwynne Jenkins, PhD, chief of the PMI program.

Sometime before the end of 2016, you’ll be hearing about the initiative from various sources, like your doctor and health care organizations you belong to.

Anyone who wants to can participate and become part of the research cohort — the more people, the better the data. The signups start this year, and NIH expects it will take three to four years to sign up a million or more people.

What’s In It For You?

If you volunteer, you will be considered a “partner” in this research effort, which means you will have access to your results.

“Participants will receive full access to all of their own data, along with summarized results from across the cohort and tools to make sense of the results,” Dr. Jenkins says. If you’re curious about how large research studies work, you’ll have an inside view. And, of course, you’ll be staying on top of important findings — for example, the health effects of certain types of diet — as they emerge.

Long term, the NIH believes it will accomplish several goals with your help:

  • Identify what makes individuals respond differently to the same medications
  • Figure out how to measure risk for diseases based on the interactions between genetic makeup and environmental factors
  • Discover the biological markers that can predict our risk of developing certain diseases
  • Find the associations between activity, environmental exposures and other measures, and specific health issues (that’s where sensor-based mobile technologies will be used)
  • Give participants information that will help improve their own health.

What’s Involved?

The PMI Cohort Program will be actively recruiting volunteers of all ages. It’s important that older people are represented.

If you want to participate, you’ll be asked to share your electronic health records, survey information and data on lifestyle habits and environmental exposures. During a physical exam you’ll have your vital signs taken and a blood sample drawn for DNA information, and your medical history and a list of medications you’re taking will be recorded. Researchers will zero in on disease risk factors such as the level of air pollution or lead in the water where you live.

The NIH says it has safeguards in place to protect people’s privacy and security. The initiative will have teams of privacy experts to maintain “rigorous” security tests and response plans in case of a security gap.

How to Participate

To be sure you know how and when to participate, you can sign up now for email updates on the PMI website.


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