Group Launches First Internet Registry Of Women With Pregnancy-Related Heart Failure

Main Category: Pregnancy / Obstetrics
Also Included In: Women's Health / Gynecology;  Cardiovascular / Cardiology;  IT / Internet / E-mail
Article Date: 14 Mar 2008 - 6:00 PDT

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Researchers at St. Vincent's Catholic Medical Center Manhattan have partnered with an Internet-based support group called A Mother's Heart to launch the first online registry of women with pregnancy-related heart failure, USA Today reports. The researchers are using A Mother's Heart's Web site to recruit women with the condition, called peripartum cardiomyopathy, in an effort to study the disease.

According to the National Heart, Lung and Blood Institute, the condition is a rare form of heart failure that affects pregnant women in the last month of pregnancy. The cause of the condition "remains a mystery," and physicians do not know how often it occurs, USA Today reports. Estimated prevalence in the U.S. ranges from one in every 3,000 pregnancies to one in every 15,000, according to USA Today (Sternberg, USA Today, 3/13).

According to a Mother's Heart Web site, more than half of patients with the condition improve quickly, regaining normal heart function within the first few weeks and months after diagnosis. "Even those who do not return to completely normal heart function can improve a great deal with treatment and live a long, comfortable life," according to the Web site (A Mother's Heart Web site, 3/13). The most recent studies of the condition suggest that 30% remain in chronic heart failure and that about 10% develop severe heart failure, require a heart transplant or die.

Jordan Safirstein, a cardiology fellow at St. Vincent's who heads the registry, said that pregnant women with the condition "often go to the doctor saying, 'I'm short of breath, my legs are swollen and I can only walk a block or two,'" and are thus ignored because these are similar complaints physicians routinely hear from pregnant women. Safirstein has already enrolled about 100 women into the registry, and about 100 more are planning to join. "I don't ever see a time when we should stop enrolling patients," Safirstein said, adding that he hopes the registry will ultimately attract funding from NHLBI (USA Today, 3/13).

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