question for Dr. Fett about PPCM Registry

[SerenaWelsh]

Dr. Fett -

Who would be the organization to pester about a PPCM registry? NIH, CDC, someone else?

[JAMESFETT]

I think it would need to be under the umbrella of NIH. in 1999-2000, NHLBI (National Heart, Lung, and Blood Institute) under NIH had funded a proposal for a national PPCM Registry, but the project fizzled, unfortunately. I recently communicated with Gail Pearson, MD, who heads up NHLBI and she indicated that they would entertain proposals for PPCM research that would incorporate a regional or national PPCM registry. Applying is one thing; receiving funding is another. In the USA the best way to make progress on both PPCM research and a registry is to group large medical centers in a region or several regions. That would permit identifying enough cases to have statistical "power" to make the study meaningful. I'm talking of arouind100 cases per year. Otherwise it is just a matter of individual centers reporting interesting findings on a few cases; helpful, but not a huge impact.

JD

[SerenaWelsh]

so the million dollar question is -
What region is large enough to report on that many cases per year?
In the past with the fizzled project, what regions were responsible?

[JAMESFETT]

Actually, when you consider 1200 to 1500 new cases of PPCM in the USA each year, it is not that difficult to identify a region or a group of large medical centers with sufficient cases. Earlier in 2005 I was working with Margaret Harper under the umbrella of NIH-NHLBI Maternal Fetal Medicine Units Network. About a dozen medical centers estimated a total of around 90 cases over a 3-year period. That proposal has not yet succeeded to secure funding. The sufficient number of cases is not the problem. The problem is the will to work on it. One could think of other diseases that have similar or less incidence that have a lot more funding and attention given--like cystic fibrosis, occurring at one case per 3500 births (compare with PPCM 1 case per 2500 to 3000 births).

JD

[SerenaWelsh]

With an estimated 1200-1500 new cases a year, why did it take 12 medical centers to come up with only 90 cases over a 3 year period?

Just trying to understand how the "machine" works.

[JAMESFETT]

12 (or so) happens to be the centers in that Maternal Fetal Medicine Unit Network, but represents only a tiny fraction of medical centers in the USA that care for patients with PPCM. Those who were promoting that study were from that small network, and found among themselves sufficient number of patients with PPCM to satisfy the statistical requirements. Some on those units had only small numbers, some larger. But I know of several medical centers with a lot more PPCM patients.

JD