Thalassemia Research and Care: 2012 Update
I. Thalassemia Clinical Research Network (TCRN)
The Thalassemia Clinical Research Network (TCRN) was established and funded in 1999 by the National Heart, Lung and Blood Institute (NHLBI), part of the National Institutes of Health (NIH), to provide a national structure to conduct clinical studies in thalassemia. The TCRN was successfully funded by the NHLBI for two five-year cycles. Many of the TCRN studies that patients and families have participated in over the past 10 years have changed health-care practices in thalassemia. Those studies have also provided researchers with vast amounts of important data with which to move forward in thalassemia research. As of December 2011, approximately 20 publications in medical journals or abstracts have been the results of data obtained in studies funded by the TCRN.
As of June 2010, the TCRN was no longer funded by the NHLBI. Its funding structure has been replaced by new funding mechanisms within the NHLBI under the heading of hemoglobinopathies, including thalassemia and sickle cell anemia. At Children’s Hospital & Research Center Oakland (CHRCO), we are dedicated to both thalassemia and sickle cell anemia research, and we are working with the NHLBI to secure funding to continue to move forward. In May 2012, we will be submitting a hemoglobinopathies grant that will encompass both sickle cell anemia and thalassemia.
Here at CHRCO, over the past 10 years of working with the TCRN, we have established collaborative relationships with other centers around California, in multiple other U.S. states, and in Canada to provide comprehensive clinical care and access to research studies to patients with thalassemia in as broad an area as possible. The satellites we have worked with include: Children’s Hospital Central California in Madera; The University of California, San Francisco (UCSF); Children’s Hospital Los Angeles; the Lucile Packard Children’s Hospital at Stanford; Children’s Hospital of Orange County; the University of California, Davis; and BC Children’s Hospital in Vancouver. Our partnerships in thalassemia research with these institutions will continue in the future with the new funding that is being established through NHLBI.
One of the first successful projects from the TCRN group to secure funding from the NHLBI is for the Thalassemia Longitudinal Cohort Study. This study will continue to follow the patients who were enrolled for up to two more years.
Clinical research in thalassemia cannot be successful without participation from patients and families of patients with thalassemia. We thank all of you who have participated and those who will participate in the future for the time and effort that you have dedicated to further the cause of thalassemia research. By working together, we hope to establish new therapies to keep patients with thalassemia healthy throughout their lives.
There are multiple studies open for patients with thalassemia at CHRCO at this time. We have listed each below, with a brief description. If there are any studies that you would like further information about, please call Olivia Oliveros, at CHRCO, (510) 428-3885, ext. 4987, or ask your clinical care provider for a referral to our comprehensive thalassemia center.