Erin
12-27-2007, 03:26 PM
For those who have participated, following is a note I received recently from Research Coordinator Ashli Zeigler re: the PPCM registery conducted by LDS Hospital and Utah affiliated hospitals:
"I just wanted to give you an update on the project.
We have collected over 40 DNA samples and have sent them off to be analyzed. As soon as we get the results (possibly 2 months from now) we can research them and try to determine if there is any genetic link. This process is lengthy and may take several months to a year to yield a response.
We did begin a local support group that met in Salt Lake City Utah. But nothing has become available as far as a website support group.
I will keep you posted if that changes."
For more information, please contact Ms. Zeigler at Ashli.zeigler@intermountainmail.org and see article below:
Deseret Morning News, Saturday, February 10, 2007
LDS Hospital studying heart ailment
Women can develop condition during or following pregnancy
By Lois M. Collins
Deseret Morning News
LDS Hospital's Heart Failure Prevention and Treatment Program has launched a registry to collect scientific data on a type of cardiomyopathy associated with pregnancy.
Dr. A.G. Kfoury
"There's not a lot of scientific data on peripartum cardiomyopathy," said Jennifer Connolly, nurse practitioner in the program.
Through the registry, the program will collect blood samples for analysis, looking for genetic tendencies and links. The researchers hope to find common identifying factors between patients with the disease and therapies that help with both treatment and prognosis.
Heart failure is the topic of today's Deseret Morning News/Intermountain Healthcare Hotline. From 10 a.m. to noon, Connolly and a cardiologist in the program, Dr. A.G. Kfoury, will take phoned-in questions. All calls are confidential.
Heart failure is a common medical condition, and the risk of developing it increases with age, says Kfoury. The symptoms of peripartum cardiomyopathy are the symptoms of heart failure: shortness of breath, fatigue and evidence on an echocardiogram that the heart muscle is failing.
Pregnancy-related cardiomyopathy, which may appear in the final month of pregnancy up to five months after, is a mystery. Doctors and researchers don't understand the cause, and there's conflicting data on whether it's safe for a woman who has developed it to have another baby.
"Generally speaking, unless she's fully recovered, we don't recommend it. Maternal mortality greatly increases if she gets pregnant and has another baby after an episode from which the heart never recovered," Connolly says.
Some women are fine, while others die. "We're just starting to learn what makes the difference."
Researchers would like to learn how to prevent cardiomyopathy and to identify those at risk early. So they're reaching through the Intermountain Healthcare network and beyond to find the women who may hold the key to understanding the condition — those who have experienced it.
One goal is to try and understand the differences that lead to different outcomes. Why do some women recover completely from the pregnancy-related heart problem, while others do not?
The researchers are also trying to form a support group for women who have the disease, which has been nicknamed PPCM.
Anyone interested in contributing to the database can e-mail either kim.allan @intermountainmail.org or Ashli.zeigler@intermountainmail.org.
"I just wanted to give you an update on the project.
We have collected over 40 DNA samples and have sent them off to be analyzed. As soon as we get the results (possibly 2 months from now) we can research them and try to determine if there is any genetic link. This process is lengthy and may take several months to a year to yield a response.
We did begin a local support group that met in Salt Lake City Utah. But nothing has become available as far as a website support group.
I will keep you posted if that changes."
For more information, please contact Ms. Zeigler at Ashli.zeigler@intermountainmail.org and see article below:
Deseret Morning News, Saturday, February 10, 2007
LDS Hospital studying heart ailment
Women can develop condition during or following pregnancy
By Lois M. Collins
Deseret Morning News
LDS Hospital's Heart Failure Prevention and Treatment Program has launched a registry to collect scientific data on a type of cardiomyopathy associated with pregnancy.
Dr. A.G. Kfoury
"There's not a lot of scientific data on peripartum cardiomyopathy," said Jennifer Connolly, nurse practitioner in the program.
Through the registry, the program will collect blood samples for analysis, looking for genetic tendencies and links. The researchers hope to find common identifying factors between patients with the disease and therapies that help with both treatment and prognosis.
Heart failure is the topic of today's Deseret Morning News/Intermountain Healthcare Hotline. From 10 a.m. to noon, Connolly and a cardiologist in the program, Dr. A.G. Kfoury, will take phoned-in questions. All calls are confidential.
Heart failure is a common medical condition, and the risk of developing it increases with age, says Kfoury. The symptoms of peripartum cardiomyopathy are the symptoms of heart failure: shortness of breath, fatigue and evidence on an echocardiogram that the heart muscle is failing.
Pregnancy-related cardiomyopathy, which may appear in the final month of pregnancy up to five months after, is a mystery. Doctors and researchers don't understand the cause, and there's conflicting data on whether it's safe for a woman who has developed it to have another baby.
"Generally speaking, unless she's fully recovered, we don't recommend it. Maternal mortality greatly increases if she gets pregnant and has another baby after an episode from which the heart never recovered," Connolly says.
Some women are fine, while others die. "We're just starting to learn what makes the difference."
Researchers would like to learn how to prevent cardiomyopathy and to identify those at risk early. So they're reaching through the Intermountain Healthcare network and beyond to find the women who may hold the key to understanding the condition — those who have experienced it.
One goal is to try and understand the differences that lead to different outcomes. Why do some women recover completely from the pregnancy-related heart problem, while others do not?
The researchers are also trying to form a support group for women who have the disease, which has been nicknamed PPCM.
Anyone interested in contributing to the database can e-mail either kim.allan @intermountainmail.org or Ashli.zeigler@intermountainmail.org.