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UConn researchers publicize 'disappointing' results in disease study, hope for better options

 Image of a mouse with bone malformation, used in research.
Courtesy
/
University of Connecticut
Image of a mouse with bone malformation, used in research.

University of Connecticut researchers have discovered that a potential treatment for a rare disease does not work — and they think it's important other scientists know.

The painful disease is known as Fibrodysplasia ossificans progressiva, or FOP. It causes muscles and ligaments to turn into bone after even the slightest injury.

A UConn professor of molecular and cell biology, David Goldhamer, worked on the study with the pharmaceutical company Alexion, which hoped a new antibody treatment it produced would stop that reaction.

But when researchers injected that antibody into mice, the bone formation was actually much worse, producing up to 50 times more bone in some cases.

"Of course, it was very disappointing," Goldhamer said. "And we still don't understand at a fine level what is going on."

UConn's paper is coming out in collaboration with another drug company, Regeneron, that independently found the same outcome. They are publishing the results so other scientists won't waste effort, Goldhamer said.

"I think the results are so dramatic and there's a great deal of interest in FOP because of how devastating this disease is," Goldhamer said. "I think this really serves as a cautionary tale for others who are interested in this approach. And so we agreed to co-submit our papers because the results are really mutually reinforcing."

He said ongoing studies do show that other antibody approaches may still be effective.

According to Goldhamer, about 800 to 900 people worldwide have been diagnosed with FOP, though up to about 4,000 people are likely to have it.

Aside from some new, limited approaches, Goldhamer said there is virtually no treatment other than pain relief.

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Karen is a radio and print journalist who focuses on health care, mental health, children’s issues, and other topics about the human condition. She has been a full-time radio reporter since for New England Public Radio since 1998. Her pieces have won a number of national awards, including the National Edward R. Murrow Award, Public Radio News Directors, Inc. (PRNDI) Award, and the Erikson Prize for Mental Health Reporting for her body of work on mental illness.

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The independent journalism and non-commercial programming you rely on every day is in danger.

If you’re reading this, you believe in trusted journalism and in learning without paywalls. You value access to educational content kids love and enriching cultural programming.

Now all of that is at risk.

Federal funding for public media is under threat and if it goes, the impact to our communities will be devastating.

Together, we can defend it. It’s time to protect what matters.

Your voice has protected public media before. Now, it’s needed again. Learn how you can protect the news and programming you depend on.

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