Meet the Mother of All Patient Registries

Cheryl Clark, July 11, 2013

The Agency for Healthcare Research and Quality is building a massive patient database to help healthcare providers identify effectiveness projects years before researchers get around to publishing their analyses.

When news of this federal project first popped into my inbox last week, it sounded like government redundancy at its best:  The Registry of Patient Registries, or RoPR, for short, was now available online, it said.

Taxpayer dollars at work, creating the mother of all patient databases? Now that's an ambitious effort.

But what the Agency for Healthcare Research and Quality is trying to develop, I now see, looks like a terrific idea. It has rich potential to eventually help providers more quickly identify effectiveness findings for myriad therapies and procedures around the world, years before researchers and peer-reviewed medical journals get around to publishing their analyses.

In an interview last week, I asked Elise Berliner, AHRQ's Technology Assessment Program Director and RoPR's project manager, to explain what RoPR is and what she thinks it can eventually be.

"Right now, we really don't know what the registries are, and who the owners of those registries are. There are many that you've heard about, but lots and lots that you haven't," she explains.  AHRQ wants to make a list.

Berliner says she thinks that worldwide, there are potentially "thousands" of registries that might be included, though only 63 are loaded into RoPR to date.

One registry included in the first rollout looks at catheter infection and rehospitalization rates for people who use parenteral nutrition at home with five years of follow up. Organized by the American Society for Parenteral and Enteral Nutrition, it has obvious implications for healthcare costs.


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