Natural History of Sickle Cell Disease
About this 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.
- Condition
- Pain Crisis
- Sponsor
- National Heart, Lung, and Blood Institute (NHLBI)
Who can join
- Age
- 2 to 90 years
- Sex
- All sexes
- Healthy volunteers
- Not accepted
Inclusion 7
- Minimum age: 2 years
- Maximum age: 90 years
- Study condition: Pain Crisis
- 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 6
- 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.
Where
3 sites, 2 recruiting
National Institutes of Health Clinical Center
Bethesda, Maryland, United States
Childrens National Health Center
Washington D.C., District of Columbia, United States
Suburban Hospital
Bethesda, Maryland, United States
Contact
-
Nancy A Asomaning
(301) 605-0398 nancy.asomaning@nih.gov
Potential match only. Final eligibility is determined by the study team.