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Observational Study to Deeply Phenotype Major Organs in Sickle Cell Disease After Curative Therapies

Study on organ health in Sickle Cell Disease after treatments.

Recruiting
18 years and older
All
Phase N/A

This study is for people with Sickle Cell Disease (SCD), a condition that affects the heart, brain, kidneys, liver, and lungs over time. Researchers want to see how treatments that aim to cure SCD can help these organs. Participants will be either starting a curative treatment soon or not planning one for the next two years.

During the study, participants will have two main visits: a baseline visit and a follow-up two years later. The baseline visit involves tests like blood work, heart tests, MRI (a type of scan), and games that check memory and attention. There will also be questionnaires and other tests to check lung function and liver health.

  • The study will last about 2 years with two major visits.
  • Participants need to travel to the NIH Clinical Center for tests.
  • People with certain health conditions cannot participate.

If you have SCD and meet the criteria, you can join the study to help researchers learn more about how treatments can improve your health.

Study details
    Mortality in Sickle Cell
    Sickle Cell Cardiopulmonary Complications
    Sickle Cell Organ Damage
    Sickle Cell Life Expectancy and Risk Factors for Early Death
    Sickle Cell Lung Disease and Sudden Death

NCT05213572

National Heart, Lung, and Blood Institute (NHLBI)

17 October 2026

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FAQs

Learn more about clinical trials

What is a clinical trial?

A clinical trial is a study designed to test specific interventions or treatments' effectiveness and safety, paving the way for new, innovative healthcare solutions.

Why should I take part in a clinical trial?

Participating in a clinical trial provides early access to potentially effective treatments and directly contributes to the healthcare advancements that benefit us all.

How long does a clinical trial take place?

The duration of clinical trials varies. Some trials last weeks, some years, depending on the phase and intention of the trial.

Do I get compensated for taking part in clinical trials?

Compensation varies per trial. Some offer payment or reimbursement for time and travel, while others may not.

How safe are clinical trials?

Clinical trials follow strict ethical guidelines and protocols to safeguard participants' health. They are closely monitored and safety reviewed regularly.
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