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Natural History of Sickle Cell Disease

Studies of the Natural History of Sickle Cell Disease

Who can join

Ages 2 to 90 · All sexes

* INCLUSION CRITERIA:
* Individuals with known or suspected sickle cell disease
* 2 years of age and older
* Willing 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).

EXCLUSION CRITERIA:

* Patient and/or guardian unable and unwilling to give informed consent or assent.
* Patients less than 2 years of age.

Individuals with known or suspected sickle cell disease will meet the inclusion criteria to enroll in this protocol and can undergo study activities. However, if the individual is found not to have sickle cell disease after enrollment, they will be removed from the protocol, and their research samples will be discarded but they will be counted toward the study accrual. The study team will notify the individual about their removal from the study and explain the reason for it. Any necessary regulatory reporting will also be completed.

About the study

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.

Sponsor: National Heart, Lung, and Blood Institute (NHLBI) · Participants: 3,500 · Started: Apr 29, 2004

Contact the study team

• Nancy A Asomaning · Phone: (301) 605-0398

Official record on ClinicalTrials.gov — NCT00081523

Locations in the U.S.

Conditions

• Pulmonary Hypertension

From ClinicalTrials.gov, data retrieved Sep 30, 2026. Each study sets its own eligibility; the study team decides who can join.