For years, children’s hospitals across the country have faced a conundrum: They wanted to fight rare diseases but saw too few patients to do statistically valid research on those diseases.Now, they say, they have power in numbers.
A bill signed into law late last month will allow children’s hospitals to work together to fight such diseases. The bill was introduced by Sen. Sherrod Brown, D-Ohio, and co-sponsored by Sen. Rob Portman, R-Ohio.
“It’s been a national effort for over eight years to bring this to reality,” said Dr. John Barnard, president of the Research Institute at Nationwide Children’s Hospital, who advocated for the bill.
He has said in the past that Nationwide has been stymied in doing research on rare diseases because it doesn’t have a large-enough sample of patients to treat. Under the new law, the hospital can team with other institutions to perform statistically valid research.
“It’s a powerful way to do research quickly and bring treatment to children much faster than we could ever do at a single-institution level,” he said. “That’s the real power in the type of model that’s been proposed and signed into law by President (Barack) Obama.”
The law requires the National Institutes of Health to create pediatric-research consortia throughout the nation. Each consortium would consist of multiple institutions and would focus on rare diseases and conditions, or conditions related to birth defects. The consortia would aim to maximize the impact of the money spent on pediatric research.
“Pediatric-research institutions and pediatric researchers face real financial challenges that threaten their important work, especially in their efforts to combat and cure rare pediatric diseases,” Brown said. “But this new law will leverage investments into pediatric research through enhanced partnerships and data-sharing among research institutions, to the benefit of our children and families.”
By Jessica Wehrman - The Columbus Dispatch, Ohio (MCT)
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