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Protocol Details

Studies of the Natural History of Sickle Cell Disease

This study is currently recruiting participants.

Summary | Eligibility | Citations | Contacts




Sponsoring Institute

National Heart, Lung and Blood Institute (NHLBI)

Recruitment Detail

Type: Participants currently recruited/enrolled
Gender: Male & Female
Min Age: 2
Max Age: 99

Referral Letter Required


Population Exclusion(s)


Special Instructions

Currently Not Provided


Acute Chest Syndrome;
Treatment Options;
Nitric Oxide;
Pulmonary Hypertension

Recruitment Keyword(s)

Sickle Cell Disease;
Sickle Cell Trait;
Red Blood Cell Disorder;
Paroxysmal Nocturnal Hemoglobinuria;
Hemolytic Disorders


Pain Crisis

Investigational Drug(s)


Investigational Device(s)




Supporting Site

National Heart, Lung, and Blood Institute

This study is not a treatment protocol and no experimental treatments are involved. Study participants may be seen as needed for clinical, translational and basic research studies, or as medically indicated. Subjects will receive their general medical care outside the NIH and will be seen at our clinic or at CNHS with varying frequency. Subjects may be seen for multiple visits. Subjects may be asked to return for additional testing as needed. Clinical care for patients with sickle cell disease will be provided as appropriate through the Sickle Cell Clinic and the inpatient clinical center.

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-Individuals with known or suspected sickle cell disease

-2 years of age and older

-Willingness and capacity to provide informed consent or appropriate informed consent from parent or legal guardian

-Patients seen at sickle outpatient clinics at any one of the participating centers (CNHS or NIH).


-Patient and/or guardian unable/unwilling to give informed consent or assent.

-Patients less than 2 years of age.

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Gaston MH, Verter JI, Woods G, Pegelow C, Kelleher J, Presbury G, Zarkowsky H, Vichinsky E, Iyer R, Lobel JS, et al. Prophylaxis with oral penicillin in children with sickle cell anemia. A randomized trial. N Engl J Med. 1986 Jun 19;314(25):1593-9.

Platt OS, Brambilla DJ, Rosse WF, Milner PF, Castro O, Steinberg MH, Klug PP. Mortality in sickle cell disease. Life expectancy and risk factors for early death. N Engl J Med. 1994 Jun 9;330(23):1639-44.

[No authors listed] From the Centers for Disease Control and Prevention. Mortality among children with sickle cell disease identified by newborn screening during 1990-1994--California, Illinois, and New York. JAMA. 1998 Apr 8;279(14):1059-60. No abstract available.

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Principal Investigator

Referral Contact

For more information:

Swee Lay Thein, M.D.
National Heart, Lung and Blood Institute (NHLBI)

James Nichols, R.N.
National Heart, Lung and Blood Institute (NHLBI)
National Institutes of Health
Building 10
Room 6N240
10 Center Drive
Bethesda, Maryland 20892
(301) 402-2105

Office of Patient Recruitment
National Institutes of Health Clinical Center (CC)
Building 61, 10 Cloister Court
Bethesda, Maryland 20892
Toll Free: 1-800-411-1222
Local Phone: 301-451-4383
TTY: 1-866-411-1010

Clinical Trials Number:


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