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CHORI Participates in New Indo-US Newborn Screening Pilot

"This is the first feasibility study to see if a sickle cell newborn screening program like we have in the United States could be adopted in India."

In an exciting new collaboration between CHORI, the Children's Hospital of Pittsburgh, and individuals in India who are involved with treating and researching blood diseases, CHORI scientist Carolyn Hoppe, MD, will be participating in the implementation of a newborn screening program for sickle cell disease in Gujarat, India.

"This is the first feasibility study to see if a sickle cell newborn screening program like we have in the United States could be adopted in India," says Dr. Hoppe, who currently heads up the state of California's newborn screening program for sickle cell disease and other blood disorders. CHORI President Bertram Lubin, MD, helped pioneer the screening program - now the gold standard - in the early 70's, and has been a key player in bringing the Indo-US collaborative grant to life.

Sickle cell disease is a blood disorder that without treatment is fatal, and can cause a host of complications from pneumonia to stroke. While the United States has about 1/34,000 children born with sickle cell disease every year, the estimated incidence is 100 times higher in India with 1/300 children born with sickle cell disease each year,  which amounts to a considerable disease burden.

“Sickle cell disease is much more common in India than in the United States,” Dr. Hoppe says.  “Unfortunately, the populations who are most severely impacted by sickle cell disease are so underserved that we don’t really have a good handle on the prevalence of sickle cell disease, particularly because children born with sickle cell may be dying, either from sickle cell related complications or other causes before anyone ever realizes the child has the disease.”

Drs. Hoppe and Lubin hope to be an integral part of changing that, however, by bringing CHORI’s considerable newborn screening expertise to the table to help reduce the number of deaths caused by sickle cell disease by identifying children with the disease early and providing preventative antibiotic treatment and comprehensive care before kids get sick.

“Kids with sickle cell disease often develop spleen problems, and the spleen is critical in fighting infections,” explains Dr. Hoppe.
"Newborn screening would identify which kids have sickle cell disease before their spleens are compromised and allow us to protect them against future bacterial infections by treating them right away with prophylactic antibiotics."
While the grant is multi-faceted, with different players providing many different pieces of the puzzle, CHORI’s main role involves screening technology and laboratory know-how.

“We have a hemoglobinopathy lab here and we do all the confirmatory testing for the state of California to identify newborns with sickle cell disease. We want to be able to help them adapt some of our practices to the model they’ll have to work with in India,” Dr. Hoppe explains. “It’s really an opportunity for us to help teach them the skills they’ll need to do this on their own. We’re going to train and develop whatever lab aspects will be most helpful for them to use.”

The Indo-US collaboration is a two-year pilot study intended to lay the groundwork for a much bigger project that could be implemented on a larger scale, once cultural and social barriers and ways around them have been identified.

"It's not like we can just do in India exactly what we do here," says Dr. Hoppe.
“You’re often dealing with people of a very remote and isolated culture who are not integrated with India’s general population, don’t understand what sickle cell disease is, and don’t have access to healthcare.”

Nevertheless, the Indo-US collaborative is uniquely suited to succeed, with the combination of CHORI’s technological and laboratory expertise, and the efforts of the principle investigator at Children’s Hospital of Pittsburg, Lakshmanan Krishnamurti, MD.

“Dr. Krishnamurti has one foot in India and one foot in the United States, so he understands both what we in the United States can offer, and the issues in India, the potential barriers, and how to navigate the political and cultural issues,” says Dr. Hoppe.

“Sometimes it seems like the barriers are so great that you really can’t make progress, but this is an example of something that is really happening. It’s going to be different than what we do in the US, but it can be done.”


Tuesday, May 17, 2011 8:19 AM

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