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Increasing Access
CHORI Scientists Collaborating to Increase Community Participation in Thalassemia Research

"All the currently accepted treatment approaches for thalassemia were published by our center and disseminated in print and through the Center's website."

CHORI scientists Elliott Vichinksy, MD, and Ashutosh Lal, PhD are spearheading a new collaborative effort with the Clinical and Translational Science Institute (CTSI) of the University of California San Francisco to increase community engagement in the translational thalassemia research conducted through Children’s world-class, Northern California Comprehensive Thalassemia Center (NCTC). The result of a highly competitive grant received by only 6 groups across the United States, the goal of the collaboration is to increase access to the state-of-the-art research conducted at the NCTC.

“The Northern California Comprehensive Thalassemia Center at Children's was responsible for developing the standards of care for thalassemia in California,” explains Dr. Lal.

The most common inherited single gene disorder in the world, thalassemia is a disease in which the hemoglobin, the part of the red blood cell that transports oxygen throughout the body, is compromised. Without treatment, thalassemia can be fatal. However, advances in treatment options and cures have significantly extended the lifespan of people with thalassemia, with many patients leading productive lives throughout adulthood.

Children's NCTC has pioneered such advances, such as the use of the ferritometer, a noninvasive way to measure and monitor iron accumulation. The NCTC also has the ability to make early diagnosis to prevent complications of iron overload, as well as a large center for transplantation from both related and unrelated donors.

Many state of the art ttreatments developed by NCTC are not available in the community at large, however, because thalassemia is such an uncommon condition in the United States.

"People in the bigger centers like ours develop significant expertise and advanced management techniques as well as opportunities to participate in the most advanced clinical research studies," explains Dr. Lal.

"We have the most advanced approaches to treating thalassemia, but unfortunately, many patients with thalassemia don't have access to them."

In the United States, those most often affected by thalassemia are immigrant populations that have migrated from either around the Mediterranean or from Asia, and as a result, many of them face significant barriers to accessing the resources provided by the NCTC.
"Many different people from many different countries with their own languages and cultures are impacted by thalassemia, and their integration into the health care system here in the U.S. is variable."
"It has to do with a whole lot of things - distance from the NCTC, economics, financial restraints, lack of awareness of the opportunities, language challenges, and cultural issues, especially for people who have migrated recently," explains Dr. Lal.

With the new collaboration underway, however, Drs. Lal and Vichinksy hope to find new ways of overcoming such barriers in order to get more patients the access to all the opportunities large centers like the NCTC have to offer.

"Our project is to use the networks of our two organizations to improve our community thalassemia outreach and participation in clinical research. We want to utilize our collective resources to approach communities in new ways and get them more involved," says Dr. Lal.

"There isn't one single approach that is going to work for all these different communities, so we need to understand the barriers in each community and come up with solutions particular to those communities."
The group has already started getting feedback from practitioners experienced in dealing with ethnic minorities in order to begin the process of tailoring solutions for each individual community. In addition, the group will be reaching out to local physicians and professional organizations who have a large number of minority patients in their practices, as well as to community leaders who could become advocates for thalassemia as well.

"Because it's quite a rare condition in the United States, advances in research and treatment need to be driven by community advocacy, by the patients, the community providers and community leaders," says Dr. Lal.

"That's why we want to involve the whole community as a group."


Tuesday, May 17, 2011 8:19 AM

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