NEW YORK – A new long-term medical study finally will bring the needs of often-overlooked populations into focus.
The “All of Us” research program, expected to last at least 10 years, is designed to help researchers develop precision medical care based on the real-life needs of individual patients. While many large-scale studies tend to look only at select groups, this study hopes to involve 1 million people from the entire spectrum of society.
Elizabeth Cohn, community engagement lead for the New York City Precision Medicine Consortium, said the study of relatively rare conditions can have benefits for health care in general, so broad participation of people with disabilities in this study will have two major impacts.
“There’s the immediate benefit of being included in research,” she said, “which can be very empowering and also assist in meeting people’s needs – and then, the greater vision of better health for our nation.”
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People who want to participate in the study can register online at joinallofus.org/together.
Jess Powers, director of communications and education for the Center for Independence of the Disabled, New York, said participants will be asked to answer questions about their health, family, home and work, and they’ll have options to provide electronic health records and biological samples.
“Depending on how much information people want to share; it’s up to them,” she said. “The idea is that this data will be anonymized and then available to researchers to make advances in medicine.”
The researchers hope people will want to be involved over time in the study, but anyone is free to opt out at any time without penalty.
Speaking not only as a health researcher but also as the mother of a child with special needs, Cohn added that this sort of comprehensive, long-term study is long overdue.
“This is an opportunity for all voices to be heard, for all concerns to be heard,” she said. “We feel strongly that the time has come for medicine to be inclusive, as other things are inclusive.”
The All of Us study is a project of the National Institutes of Health.