UW-Madison joins research fight to help ‘All of Us’
MADISON, Wis. — The UW is at the center of the most ambitious medical research project of our time, one that will affect all of us.
The All of Us research program has a goal of recruiting 1 million participants over the next five years, and 100,000 of them will come from Wisconsin.
“It’s to really change the way we do research in terms of diagnosis, treatment and prevention, by identifying risk factors for hundreds of conditions,” one of the principal co-investigators, Dr. Dorothy Farrar Edwards, said. “This is the first really huge initiative to get enough people that are diverse enough to address these problems in a representative sample.”
Already, more than 4,000 Wisconsin residents have signed up in a short period of time. The Wisconsin research group consists of researchers at UW-Madison, the Marshfield Clinic and the Medical College of Wisconsin.
Madison resident Annie Weatherby-Flowers joined All of Us in order to help future generations of her family, but also to get some answers for herself.
“I want to know why, why are we having all of these things,” Weatherby-Flowers said. “My family, we have a lot of autoimmune diseases, and a lot of them are European American, and we’re black.”
Weatherby-Flowers said she lost two siblings at young ages, and she herself has dealt with several diseases, including Paget’s disease, lupus, fibromyalgia and Graves’ disease. She’s done her research in seeking answers, including tracking her family’s ancestry.
“Because of slavery, I can connect my white ancestry, I can actually connect great-great-great-grandparents, who were mulatto,” Weatherby-Flowers said. “Now I just want to find out why. I’m trying to connect that the origin, and maybe look at preventing or doing some intervention for my grandbabies and future generations.”
She has two sons, and nine grandchildren.
“Many people volunteer for the greater good, and so we’ve been able to understand the diagnosis and come up with potential treatments,” Farrar Edwards said.
Signing up for the research project is easy. After filling out some consent forms and a questionnaire, participants will be contacted to set up an appointment to draw blood, provide a urine sample and have blood pressure and height and weight recorded.
“The hardest part was doing all the paperwork, the registration, answering all the questions and the surveys,” said Weatherby-Flowers, who also had concerns about the confidentiality of her personal health information.
Farrar Edwards said every possible measure has been taken to assure participants that their privacy will be protected at the same level as the National Security Agency. Biospecimens will be sent to the Mayo Clinic, and data will be recorded at Vanderbilt University.
Participants’ names will not be attached to their data, though they will have be given information on any findings connected to their personal health.
Weatherby-Flowers has gotten several family members to participate, and she hopes she’s able to help researchers find answers, so that future generations don’t deal with the pain she faces each day.
“Hopefully, this will help, because I don’t want my grandbabies and other folks to suffer like I’ve seen my siblings,” Weatherby-Flowers said.
To sign up for the All of Us research program, go online or call 888-294-2661. Participants must be 18 years of age, and will receive $25 for taking the time to participate.
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