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Commitment to Care First Time Identification of Huge Disparity in Iron Overload Monitoring between Patients with Thalassemia and Patients with Sickle Cell Disease
With a dramatic new study published in Transfusion’s May issue, CHORI investigators Ellen Fung, PhD and Elliott Vichinsky, MD, chief of the division of Hematology/Oncology at CHRCO, along with CHRCO clinical scientist Paul Harmatz, MD, hope to establish and promote the first ever standard of care guidelines for monitoring iron overload in sickle cell disease (SCD) patients. The Multi-Center Study of Iron Overload is a 4 year, longitudinal natural history study comparing iron overload in patients with thalassemia and SCD in subjects recruited from nearly 30 different clinical hematology centers from the United States, Canada and the United Kingdom. While Dr. Fung suspects that clinicians who routinely deal with these two patient populations won't be entirely surprised by the data from the new longitudinal study, the Transfusion publication provides hard numbers for the first time to confirm a disparity that researchers and physicians have been experiencing on an anecdotal basis in the clinic for some time. "Thalassemia patients are followed religiously to track iron-overload related issues," says Dr. Fung of the study results. "They get endocrinology work-ups every year, their hormones are checked, they get liver biopsies on a regular basis, as well as testing for cardiac failure and a whole slew of blood work. It's very regimented." Dr. Fung wouldn't have expected to find anything less: thalassemia has had a very active patient group and significant levels of advocacy and patient support for the past 3 decades or so. The numbers on how well SCD patients were monitored, however, were alarming. "Even though there are roughly a thousand patients in North America with thalassemia, as compared to over 70 thousand with sickle cell disease, monitoring for iron-overload and related dysfunction in sickle cell patients was entirely haphazard, even in centers that treat both types of patients," Dr. Fung says. There are a number of potential explanations for this disparity, such as a lack of patient follow-through, lack of insurance coverage for testing, doctors who are not as well versed in the possibility of iron-overload in sickle cell populations, and a dearth of strong guidelines about how iron-overload should be addressed in this population. All of these potential causes, however, stem from the fact that the main focus of SCD treatment has been pain management, because that has been the most prominent feature of the condition.
"We're going to push our own publicity on this as much as we can," says Dr. Fung. "We want everyone to have this data so that we can start monitoring these patients and begin to establish a much needed standard of care for iron overload in SCD patients." With such guidelines in hand, Drs. Fung and her colleagues are committed to ultimately balancing the disparity in treatment between these two patient populations to make sure that the same rigor in proactive monitoring and care that thalassemia patients currently receive is provided to SCD patients as well.Tuesday, May 17, 2011 8:19 AM |
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© 2005 Children's Hospital Oakland Research Institute |