Child Health Leaders Applaud Recommendation to Include Children in PMI

March of Dimes, AAP express optimism that the Precision Medicine Initiative will include children

Washington, District of Columbia | Thursday, September 17, 2015

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The March of Dimes and the American Academy of Pediatrics (AAP) praised the Precision Medicine Working Group for recommending today that children be included in the Precision Medicine Initiative (PMI) from its earliest stages.

“The Working Group made exactly the right call today in saying that children should be included in the PMI from its inception,” stated March of Dimes President Dr. Jennifer L. Howse.  “The PMI has the potential to offer tremendous insights into maternal and child health.  The March of Dimes is thrilled that children will part of this critically important initiative from day one.”

“Early investment in pediatric research is essential to our understanding of what every child needs to be healthy and thrive. Through its recommendation to include children in the Precision Medicine Initiative, the Working Group has taken a major step in the right direction to ensuring children can benefit from new medical advances and discoveries that lead to a healthier life,” said AAP Executive Director/CEO Karen Remley, MD, MBA, MPH, FAAP. “The health and success of children today and future generations to come depends on our ability to invest in their health from the outset, and the inclusion of children in the PMI will help do just that.”

The White House has proposed establishment of a Precision Medicine Initiative, one major component of which would be the establishment of a voluntary study cohort of at least one million people. Congress has set aside hundreds of millions of dollars for the PMI in current drafts of federal spending bills.  Until now, no decision had been announced as to whether children would be included in this research cohort.  Today, the Working Group recommended to the National Institutes of Health Director that children be included in the study from its very beginning.

“Since children will be part of this project from its start, systems and processes will be designed to accommodate them,” Dr. Howse explained.  “It would be much more complicated and expensive to redesign those frameworks later to address child research issues.  Moreover, the PMI has the potential to revolutionize the way we conduct certain kinds of research.  Our children deserve to benefit from those innovations right away.”

In early September, the March of Dimes and the AAP led over 30 major maternal and child health organizations in writing to the PMI Working Group co-chairs to urge that children be included in the research cohort from its inception.  The letter stated that doing so would ensure that the cohort and its supporting frameworks are structured to accommodate their unique needs, such as recording parental consent, adapting data collection techniques with age, and involving perinatal and pediatric experts in the development of study questions. The letter went on to say that while certain challenges were present in conducting research with children, none of them was insurmountable.  The full letter is available online here

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About the American Academy of Pediatrics
The American Academy of Pediatrics is an organization of 64,000 primary care pediatricians, pediatric medical subspecialists and pediatric surgical specialists dedicated to the health, safety and well-being of infants, children, adolescents and young adults. For more information, visit www.aap.org and follow us on Twitter @AmerAcadPeds.

About March of Dimes

March of Dimes leads the fight for the health of all moms and babies. We support research, lead programs and provide education and advocacy so that every baby can have the best possible start. Building on a successful 80-year legacy of impact and innovation, we empower every mom and every family.

Visit marchofdimes.org or nacersano.org for more information. Visit shareyourstory.org for comfort and support. Find us on Facebook and follow us on Instagram and Twitter.