Sickle Cell Anemia Research Study
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ASSET Pulmonary Hypertension Trial
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This clinical research study will test the ability of the drug, bosentan, to decrease elevated blood pressure in the pulmonary artery (the blood vessel that leads from the heart to the lungs).
You may be eligible to participate in this study if you are over the age of 12 and have sickle cell disease and symptoms or lung tests indicating that the blood pressure in your pulmonary (lungs) artery may be elevated. This condition is called pulmonary hypertension. Pulmonary hypertension can cause fatigue, dizziness, and shortness of breath because the blood vessels that supply the lungs narrow, forcing the heart to work harder to push blood through.
For more information please contact Lori Hunter or Wynona Coles at 301-435-2345 or email VascularStudy@nhlbi.nih.gov
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Sickle Cell Anemia Research Study
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Collection and Storage of Umbilical Cord Blood for Sickle Cell Disease
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If you are pregnant and expecting a baby that may have sickle cell disease you might be interested in our research study. We are collecting umbilical cord blood from newborns that may have sickle cell disease and we are freezing the hematopoietic stem cells that are in the cord blood. Hematopoietic stem cells are used in transplant treatment of sickle cell disease; the more cells the doctors use the better the outcome. The goal of our research is to come up with the best ways to harvest, freeze and thaw the stem cells from the umbilical cord blood so when it comes time to use the stem cells for treatment there will be a lot of high quality cells to use.
To be eligible for this program the pregnant mother must be between the ages of 18 - 45 and she must plan to deliver her infant at a hospital in the Washington Metropolitan Area. The pregnant mother needs to attend a meeting with the nurse coordinator in order to go over the program and give consent before labor begins. There is no cost to the family or their insurance carrier for this program.
For further information please contact the research nurse coordinator at
Office phone: 301-594-8381
Fax: 301-594-9153
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Sickle Cell Anemia Research Study
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Erythropoietin and Hydroxyurea Study
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This study will examine the use of hydroxyurea and erythropoietin(a hormone produced by the kidney) for treating sickle cell disease in patients who also have kidney disease or pulmonary hypertension (high blood pressure in the lungs). Hydroxyurea increases production of fetal hemoglobin in the red blood cells of patients with sickle cell disease, reducing the amount of sickle cells that cause pain and other complications requiring hospitalizations. However, hydroxyurea treatment has limitations: patients with sickle cell disease who have developed kidney disease may not be able to get the full benefit of the medicine, and hydroxyurea alone may not be able to treat life-threatening complications such as pulmonary hypertension or stroke. This study will determine which of two dosing schedules of hydroxyurea and erythropoietin is more effective for treating patients with sickle cell disease who also have kidney disease or pulmonary hypertension, and will examine whether the two drugs can lower blood pressure in the lungs.
Patients 18 years of age and older with sickle cell anemia and kidney disease or pulmonary hypertension, or both, may be eligible for this study. Candidates are screened with a medical history, physical examination, blood tests, a 6-minute walk test (test to see how far the subject can walk in 6 minutes), and echocardiogram (ultrasound of the heart to measure blood pressure in the lungs).
Please contact research nurse, Marlene Peters-Lawrence, at 301-443-6144 for more information or email VascularStudy@nhlbi.nih.gov
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Sickle Cell Anemia Research Study
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Inhaled Nitric Oxide and Sildenafil Study
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Individuals who have sickle cell disease and pulmonary hypertension (increased blood pressure in the lungs) sometimes have more complications (shortness of breath, pain crises, pneumonia, and death). Because of this increased risk, this clinical trial will evaluate if experimental treatments for high blood pressure in the lungs can lower pressures in the lungs and reduce the likelihood of complications. The study has three parts.
The first part involves a thorough screening of your heart and lungs. These tests will be performed on an outpatient or inpatient basis. The second part is specialized testing at the Clinical Center, during which blood pressure in the blood vessels going to your lungs (pulmonary artery) will be measured. The third part of the study is for experimental treament, during which the drug sildenafil will be combined with inhaled nitric oxide gas for 6 weeks. This can be done as either an inpatient or outpatient and you must have been taking sildenafil for 3 months and still have high blood pressure in the lungs.
For more information, please contact study coordinators, Lori Hunter or Wynona Coles at 301-435-2345 or email VascularStudy@nhlbi.nih.gov
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Sickle Cell Anemia Research Study
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Natural History of Sickle Cell Disease
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This research protocol allows us to evaluate and treat you because you have sickle cell disease, sickle cell trait, or another anemia or red blood cell disorder such as thalassemia. This will help us gain more understanding of your disease, painful attacks and lung complications often associated with these anemias. You will receive standard medical care for your blood disease and its complications. This means that you will not receive experimental treatment under this protocol.
Your evaluation may also provide information indicating that you are elgible for another protocol at the NIH. If so the other protocol will be discussed with you. You are under no obligation to participate. This study enrolls individuals ages 5 and over.
Please contact our research study nurse at 301-435-2345 or email VascularStudy@nhlbi.nih.gov
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Sickle Cell Anemia Research Study
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Niacin Therapy in Sickle Cell Disease
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Niacin is a vitamin that has been shown to improve blood flow in people without sickle cell disease. This study will test whether this is also true in patients with sickle cell disease. In sickle cell disease, abnormal hemoglobin called sickle hemoglobin can interfere with blood flow to cause the symptoms of your disease.
You may be eligible to participate if you are a male or female 18 years of age or older and have sickle cell disease and certain laboratory findings that indicate possible blood flow abnormalities.
For more information please contact Amy Chi at 301-435-2345 or email BloodStudy@nhlbi.nih.gov
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Sickle Cell Anemia Research Study
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Pain Crisis Inhaled Nitric Oxide (DeNOVO) Study
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If you (or your child) have sickle cell disease and sometimes experience severe pain, researchers at the NIH are studying a new medicine to see if it will reduce the time it takes for your pain to go away. The new medicine is a gas called nitric oxide (NO). The study involves one of two possible treatments: 1) to receive regular treatment plus a new (experimental) medicine, or 2) to be in a control group, which receives regular treatment plus a placebo. The placebo medicine is nitrogen, a gas that makes up most of the air that we breathe. Nitric oxide (NO) is already approved by the FDA to improve breathing in newborn babies with lung problems. NO is not proven to help in sickle cell disease. This research study is trying to find out if breathing NO will reduce the length of time you (or your child) experience a painful crisis.
You (or your child) will be eligible to participate if you (or your child) are 10 years of age or older and have hemoglobin SS disease or hemoglobin S beta thalassemia disease and experience painful crisis several times in a year.
For more information and to see if you are eligible contact the study coordinator at 301-402-2104 or email VascularStudy@nhlbi.nih.gov
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Sickle Cell Anemia Research Study
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Pulmonary Hypertension Research Screening Study
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Researchers at the NIH invite you to take part in a study that will help us learn how often people with sickle cell anemia develop a complication called pulmonary hypertension. Pulmonary hypertension is a serious disease in which blood pressure in the artery to the lungs is elevated.
You are eligible to participate if you are 18 years of age or older and have sickle cell disease. This study consists of an initial evaluation (including a physical exam, blood tests, and an echocardiogram), a follow-up telephone interview every year after the initial echocardiogram, and a repeat echocardiogram and blood tests approximately two years after the first. There is no cost to participate.
Please contact the study coordinator at 301-402-2104 for more information or email VascularStudy@nhlbi.nih.gov
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Sickle Cell Anemia Research Study
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Stem Cell Transplant for Sickle Cell Anemia
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If you (or someone you know) is between the ages of 16-65 years and have been diagnosed with sickle cell anemia, you may be eligible for a stem cell transplantation procedure at the Clinical Center of the National Institutes of Health (NIH). Under evaluation is the use of low-dose radiation and novel methods of transplant preparation and post transplant therapy to reduce the risk of graft-versus-host disease.
You must have an HLA-matched family member to participate. We will do the blood testing free of charge to see if your family member is a match. We pay for all medical costs related to the transplant procedure. You must be available to live near NIH for approximately four months. We also provide a small daily allowance to help with living expenses while you are on the study and living away from home.
For more information please contact our research coordinator at (301) 402-3087 or by email at BloodStudy@nhlbi.nih.gov
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Department of Health
and Human Services
National
Institutes of Health
National Heart, Lung, and Blood
Institute