Follows people with sickle cell disease over time through clinic visits
Observes people with sickle cell disease and pain crises through clinic visits.
Plain-language title generated from the registry record
Registry title: Natural History of Sickle Cell Disease
Key facts
- Where
- Bethesda and Washington D.C., United StatesSee the 3 sites
Could this be for you?
Answer for yourself. This is not a decision: only the study team can say whether you can take part.
- Are you between 2 and 90 years old?
Source: NCT00081523, who can take part
Where in United States
- National Institutes of Health Clinical CenterBethesda, United StatesTaking people
- Suburban HospitalBethesda, United StatesNo longer taking part
- Childrens National Health CenterWashington D.C., United StatesTaking people
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Trial details
- Who runs it
- National Heart, Lung, and Blood Institute (NHLBI)
- Trial code
- NCT00081523
- Record updated
- 9 November 2026
- Original description
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.Read full original descriptionShow less
Studies of the Natural History of Sickle Cell Disease
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.
Exclusion: 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; Patient and/or guardian unable and unwilling to give informed consent or assent.
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).