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A Helping Hand - Across the Globe
CHORI Hosts International Workshop on Sickle Cell Disease

On October 15th and 16th, 2009, CHORI hosted the second international gathering of sickle cell researchers, the Advanced Workshop on Sickle Cell Disease, sponsored by Novartis and led by the hospital CEO Bertram Lubin, MD, and CHORI scientist and chief of the division of Hematology/Oncology at the hospital, Elliott Vichinsky, MD.

Providing cutting-edge presentations on the practical management of sickle cell disease (SCD) and related therapies, the symposium provided a unique forum for international participants from Saudi Arabia, Kuwait, Lebanon and Switzerland to discuss the current state of treatment in the United States and abroad, and to identify potential opportunities for collaboration


An inherited blood disorder, SCD is fatal without treatment and comes with a host of complications from pneumonia to stroke. While there are about 100 thousand patients with SCD in the United States, the global disease burden from SCD is staggering. In Africa, for instance, estimates suggest there are about 30 to 40 million patients with the disease. The clinical severity of the disease is markedly different between different patients and often from country to country. So are the treatment approaches and their availability.

"While the mutation that causes hemoglobin to be sickle hemoglobin is the same in all sickle cell patients, other mutations that allow better blood flow, for example, or increase stroke risk, have nothing to do with hemoglobin but also have an effect," explains Dr. Kuypers. "Together, SCD affects the whole body, and many factors can mitigate or worsen the outcome of the simple mutation that leads to sickle hemoglobin. We really have only scratched at the surface of understanding this better."

These mutations can be completely different from one country to another, and can dramatically change the clinical landscape of SCD. Increased global collaboration is key to getting below the surface and helping determine the best ways of treating SCD in various international settings.
"We are very interested in partnering with other physicians from different countries to help increase pediatric health not just in the United States, but globally," says Frans Kuypers, PhD, a scientist in CHORI's Center for Sickle Cell Disease and Thalassemia and one of the workshop's speakers.
"One of the things we focus on in the United States is treating SCD in adult populations. The kids we see in our clinic don't just disappear when they turn 18."
Instead, CHORI's Center for Sickle Cell and Thalassemia, led by Dr. Vichinsky, treats patients well into adulthood. In other countries, however, SCD is often regarded as a childhood disease, because unfortunately patients do not survive into adulthood.

Hosting the Advanced Workshop on Sickle Cell Disease is one step in CHORI's larger effort to create the collaborative networks necessary to help spread the wealth of knowledge and technological advances related to SCD that are currently available in the United States but often lacking in other regions.

"The workshop was designed so that we could share what we do, and how and why we do it, and then we could all discuss it so that we could also learn from other physicians and researchers whether or not our approaches apply in their countries, what their issues are, what they are dealing with on a day to day basis," Dr. Kuypers says.
"The partnership between clinicians and physicians is essential to solve an issue that affects millions of people on this planet. We can learn from the experience on both sides of the aisle."

With the latest workshop, CHORI hopes to continue to do just that, providing not only the state-of-the-art research required to advance SCD treatment, but also offering the collaborative forum in which to address the international needs of SCD patients.

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Tuesday, May 17, 2011 8:19 AM

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