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Natural History of Sickle Cell Disease

Studies of the Natural History of Sickle Cell Disease

Who can join

As published by the study on ClinicalTrials.gov. "Not stated" means the study hasn't said — ask the study team.

Age
2 Years to 90 Years
Sex
All sexes
Healthy volunteers
Not accepted
Compensation
Not stated

Other requirements are listed under Eligibility below. Only the study team can confirm whether you can join.

What to expect

No one can promise a trial will help you personally — that is what the research is trying to find out.

What participation involves

  • Procedures mentioned: Physical exams

Only what the study's summary and detailed description on ClinicalTrials.gov say. Time periods may describe the whole study or a part of it — ask the study team what applies to you.

Show the study's own words
  • "Patients will be evaluated with a medical history and physical examination and routine laboratory studies will be obtained as needed to assess diagnosis, disease activity, and disease complications and to monitor for treatment-related responses and toxicities."
Compensation
Not stated
  • Study-related exams and procedures are typically provided at no cost. This is how many trials work in general — confirm the details for this study with the study team.
  • Participants are monitored closely by the research team throughout the study.
  • Some participants may receive access to an investigational treatment, which is still being studied.
  • Your participation helps researchers learn whether this approach could help future patients.

About this study

In plain language

This study follows people age 2 and older who have or may have sickle cell disease, a condition that affects red blood cells. It does not test treatments or use experimental treatments. People may have several study visits and may be asked to return for more tests.

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.

Compensation is read from the study's own description and may be missing — always confirm with the study team.

Eligibility

Who can join

  • Have sickle cell disease or be suspected of having it.
  • Be age 2 or older.
  • Agree to join after learning about the study, or have a parent or legal guardian give permission.
  • Be seen at a sickle cell outpatient clinic at NIH or CNHS, the participating study centers.

Who can't join

  • The patient or guardian cannot and will not give permission or agreement to join.
  • Be younger than age 2.
  • If tests after joining show you do not have sickle cell disease, you will be removed from the study and your research samples will be discarded.

Simplified for readability. The official criteria below are what the study team uses.

Official eligibility criteria

* 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.

Study sites (3)

DC

MD