H.R. 225: Surveillance Hidden in Pediatric Research Bill

H.R. 225: National Pediatric Research Network Act of 2013

The House overwhelmingly passed a bill that looks like it would fund pediatric research but, according to CBO, would expand surveillance. Of what? Don’t know.

The Director of the National Institutes of Health (a gov’t agency) can create a network of up to 20 groups of public or private non-profits to work together to do pediatric research.

As a condition of accepting an award, the groups need to agree to help the Centers for Disease Control with the establishing patient registries and “other surveillance systems as appropriate and upon request by the Director of the Centers.”

Establishes a “Data Coordinating Center” to…

1. Distribute scientific findings
2. Help design and conduct research projects and to manage the resulting data
3. “To organize and conduct multi-site monitoring activities”

The bill doesn’t give the National Institutes of Health (NIH) any money to do this.

Congressional Budget Office (CBO) analysis

NIH already supports many research networks that support research and training focused on pediatric health care needs and operates data coordinating centers for those networks.

Those networks perform essentially the same activities as the groups described in the bill.

The existing networks are not helping the CDC to establish surveillance systems.

…CBO estimates that implementing H.R. 225 would have “no effect on the number” of research groups or data coordinating centers that NIH would support.

“CBO expects that CDC would request assistance from a few networks to establish surveillance systems.”

This bill passed the House overwhelmingly on February 4th, 2013. It now moves into the Senate.