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Upcoming Thalassemia Studies

TCRN Pulmonary Hypertension (PHT) Study
This study will be open in winter 2007/2008. This study is a pilot study that will enroll 20 patients with pulmonary hypertension (high blood pressure in the lungs). 10 of the patients will be treated with Arginine pills and 10 patients will be treated with sildenafil pills. The study will last 12 weeks. All patients will be closely followed with safety and study labs, 6 minute walk test, pulmonary function tests and cardiac MRI.

Twenty patients with thalassemia who do not have pulmonary hypertension will also be recruited to be in this study. For those patients, no drugs will be given but similar testing will be completed (Pulmonary function testing, Cardiac MRI, 6 minute walk test and labs). The testing will be done only one time for the patients who do not have PHT. We will then be able to compare the group with PHT to the group without PHT.

If you might be interested in this study, please contact Nancy Sweeters at 510-428-3885, ext. 4151 or nsweeters@mail.cho.org.

Exjade/Desferal Combination Study
This study will be opening summer 2007. Exjade and Desferal are both licensed drugs for chelation therapy in thalassemia, but the safety of these drugs being given together has not yet been established. This study will enroll 15 patients who will be followed on the combination therapy for 1 year. Patients will be monitored closely for safety (labs and clinical tests). This combination study is for patients who have iron overload and other organ dysfunction, such as abnormal T2* or endocrinopathies. We will be enrolling patient 14 years old and older for this one year study.

If you might be interested in this study, please contact Nancy Sweeters at 510-428-3885, ext. 4151 or nsweeters@mail.cho.org.

Pain Prevalence Study
Extended life spans for individuals with thalassemia have exposed previously unidentified issues. Patients and providers are now addressing issues of fertility, career and for many patients, chronic pain has become an issue. With the recent enactment of pain as the fifth vital sign, it is difficult to determine whether pain is more common in the aging thalassemia population or if it appears more common because we are now regularly assessing for pain. Whatever the case, chronic pain and its appropriate management has been identified by patients and providers as an emerging issue, particularly in patients greater than 12 years of age.

The objective of the pain study is to assess pain prevalence in patients with transfusion and non transfusion dependent thalassemia. The goals of the survey would be to determine the percentage of patients suffering with pain, the location of pain, pain management techniques currently being utilized and the extent to which pain is affecting the patientís quality of life.

Patients will be asked to complete the Brief Pain Inventory on three occasions to assess their pain levels during the study period. In addition, a randomly selected group of 25 transfusion dependent patients will be asked to complete the Brief Pain Inventory-short form daily during two transfusion cycles to assess whether pain levels vary in frequency and intensity during a transfusion cycle.

The pain study is being developed by the Nurse and Coordinator Committee of the Thalassemia Research Network. For more information please contact Dru Foote, RN, PNP of CHRCO at 510-428-3347 or dfoote@mail.cho.org.

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