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New study tracks organ health after sickle cell 'Cures'

NCT ID NCT05153967

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now This study
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 27, 2026 · Last updated Jul 28, 2026 · Updated 2 times

Summary

This study follows 750 people with sickle cell disease to see how curative therapies affect the heart, lungs, and kidneys over time. Researchers will compare those who received a stem cell transplant with those on standard treatment. The goal is to understand whether curative therapies improve or worsen organ damage, helping patients make better treatment choices.

What this could mean

Our plain-language read of the trial. This is informational only, not medical advice or a prediction.

What this could lead to
If successful, this study could help doctors and patients decide whether curative therapy or standard care is better for long-term heart, lung, and kidney health.
What could go wrong
This is an observational study, not a treatment trial. It will not test a new drug or cure, and results may take years to influence care.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

About 750 people

The number the study aims to enrol. It can still change while the study runs.

Started

Jul 2022

Expected to finish

Feb 2027

An estimate. End dates often move.

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

Participants will be patient volunteers from the sickle cell disease clinics and transplant centers of participating study sites.

Ages

4 to 65 years

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

Inclusion Criteria * Confirmed laboratory diagnosis of SCD * Ability to give informed consent * Ability to provide pre- and post-curative therapy data * Treated with either one HSCT or with standard disease-modifying therapy Exclusion Criteria •History of non-compliance

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Conditions

The condition(s) this trial relates to.

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The places running it

    5 sites. The list below names each one and where it is.

  2. The official record

    ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.

    Open the record ↗

  3. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

Contacts and locations

Locations

  • Children's National Medical Center

    NOT_YET_RECRUITING

    Washington D.C., District of Columbia, 20010, United States

  • Emory University School of Medicine

    NOT_YET_RECRUITING

    Atlanta, Georgia, 30322, United States

  • Johns Hopkins Hospital

    NOT_YET_RECRUITING

    Baltimore, Maryland, 21287, United States

  • National Institutes of Health Clinical Center

    NOT_YET_RECRUITING

    Bethesda, Maryland, 20814, United States

  • Vanderbilt University Medical Center

    RECRUITING

    Nashville, Tennessee, 37232-9000, United States

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