Sickle Cell Anemia Research Study
|
Collection and Storage of Umbilical Cord Blood for Sickle Cell Disease
|
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: 301-402-2104
Fax: 301-402-3088
|
|
 
|
|
|
|
Protocol Information |
|
|
|
Disease and Treatment Information |
|
|
| |
|
|
Sickle Cell Anemia Research Study
|
Natural History of Sickle Cell Disease
|
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 eligible 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
|
|
|
|
|
|
Protocol Information |
|
|
|
Disease and Treatment Information |
|
|
|
Support Groups |
|
|
| |
|
|
Sickle Cell Anemia Research Study
|
Pulmonary Hypertension Research Screening Study
|
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
|
|
|
|
|
|
Protocol Information |
|
|
|
Disease and Treatment Information |
|
|
|
Support Groups |
|
|
| |
|
|
Sickle Cell Anemia Research Study
|
PUSH - Risk Factors for Pulmonary Hypertension
|
The study will look at the risk factors for pulmonary hypertension (high blood pressure in the lungs) in children over 3 years of age and adolescents with sickle cell anemia (SCA) and examine the role of hypoxia (oxygen shortage) in the disease. In patients with SCA, red blood cells become sickle-shaped and tend to form clumps that get stuck in blood vessels, blocking blood flow to the limbs and organs. Blocked blood vessels can cause pain, serious infections, and organ damage. Many patients with SCA also develop pulmonary hypertension.
Children and adolescents with SCA or Chuvash polycythemia (another blood disorder that carries an increased risk for pulmonary hypertension) may be eligible for this study.
Participants undergo the following procedures at the beginning (baseline) and end of the study:
History, physical examination and blood tests .
Echocardiography (ultrasound study of heart function).
Lung function tests.
6-minute walk (measure of the distance covered in 6 minutes of walking).
In addition, patients are followed by telephone or by clinic visits every 6 months for a review of their medical history and medications. A physical examination is also done at 12 months.
BloodStudy@nhlbi.nih.gov
|
|
|
|
|
|
Support Groups |
|
|
| |
|
|
Sickle Cell Anemia Research Study
|
Stem Cell Transplant for Sickle Cell Anemia
|
If you (or someone you know) is at least 4 years of age and have severe sickle cell disease, you may be eligible for a stem cell transplantation procedure at the Clinical Center of the National Institutes of Health (NIH). We are studying low-dose radiation and a new combination of medications to improve transplant results.
You must have a healthy first-degree family member (parent, child, or brother or sister) to participate. We pay for all medical costs related to the transplant procedure. You must be available to live near the NIH for approximately four months. A small daily allowance may be provided 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) 402-6466 or by email at BloodStudy@nhlbi.nih.gov
|
|
|
|
|
|
Protocol Information |
|
|
|
Disease and Treatment Information |
|
|
|
Support Groups |
|
|
| |
|
|
|
Department of Health
and Human Services
National
Institutes of Health
National Heart, Lung, and Blood
Institute