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Major study to decide: transplant or medication for kids with sickle cell?

NCT ID NCT06941389

Knowledge-focused Sponsor: University of Rochester Source: ClinicalTrials.gov ↗

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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 25, 2026 · Last updated Jun 27, 2026 · Updated 1 time

Summary

This large study will follow 480 children with sickle cell disease to compare two treatment approaches: a stem cell transplant from a matched family donor versus standard disease-modifying therapies. The goal is to see which option leads to better quality of life and thinking skills over three years. By tracking both groups, researchers hope to provide clear information to help families and doctors make informed treatment decisions.

What this could mean

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

Active substance
matched related donor hematopoietic stem cell transplantation (MRD HCT) and non-transplant disease-modifying therapies (NT-DMT)
What this could lead to
If successful, this study could help families and doctors choose the best treatment for children with sickle cell disease by comparing long-term quality of life and thinking abilities.
What could go wrong
This is an observational study, not a controlled trial, so results may be influenced by factors like patient choice. It will take years to complete and may not provide clear answers for every child.

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 480 people

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

Started

Jun 2024

Expected to finish

Oct 2030

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

The WeDecide study includes 480 pediatric patients with sickle cell disease (SCD) from two sub-studies: Project Sickle Cure (PSC), focusing on patients receiving transplant through the Sickle Cell Transplant Advocacy Research Alliance (STAR), and the Globin Research Network for Data and Discovery (GRNDaD), a registry of patients on non-transplant disease-modifying therapies (NT-DMT) run by the National Association of Sickle Cell Centers (NASCC). MRD HCT Group: 160 children receiving matched related donor hematopoietic stem cell transplantation (MRD HCT) will be assessed before and at multiple post-transplant time points to evaluate long-term effects. NT-DMT Group: 320 children receiving non-transplant disease-modifying therapies (NT-DMT) will be assessed at study start and annually for three years to track treatment effects.

Ages

3 to 20 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: * Pediatric patients aged between 3 and 20.9 years. * Children diagnosed with sickle cell Anemia (HB SS or HBSB0 Thalassemia) * For the MRD HCT group, children who are candidates for matched related donor hematopoietic stem cell transplantation (MRD HCT). * For the NT-DMT group, children who are receiving non-transplant disease-modifying therapies (NT-DMT) for SCD. * Participants (or their guardians) must provide informed consent to be part of the study. * Participants must be willing to undergo the necessary assessments and follow-up visits over the 3-year study period. Exclusion Criteria: * Children younger than 3 years or older than 20.9 years. * Children who do not have sickle cell anemia or related conditions. * For the MRD HCT group, children who are not eligible for the transplant or do not have a matched related donor. * Children who are currently enrolled in other clinical trials that might interfere with the WeDecide study. * Children who are unable to adhere to the study protocol or follow-up requirements.

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Conditions

The condition(s) this trial relates to.

sickle cell disease

As listed by the trial registrant

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

Sickle cell disease (SCD)

How to take part

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

  1. The places running it

    37 sites in 2 countries. 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

  • Alberta Children's Hospital (MRD-HCT)

    RECRUITING

    Calgary, Alberta, T3B6A8, Canada

  • Alberta Children's Hospital (NT-DMT)

    NOT_YET_RECRUITING

    Calgary, Alberta, T3B 6A8, Canada

  • Atrium Health (MRD-HCT)

    RECRUITING

    Charlotte, North Carolina, 28203, United States

  • Boston Children's Hospital (MRD-HCT)

    RECRUITING

    Boston, Massachusetts, 02115, United States

  • Boston Children's Hospital (NT-DMT)

    NOT_YET_RECRUITING

    Boston, Massachusetts, 02115, United States

  • British Columbia Children's Hosptial (MRD HCT)

    NOT_YET_RECRUITING

    Vancouver, British Columbia, Canada

  • Children's Healthcare of Atlanta (MRD-HCT)

    RECRUITING

    Atlanta, Georgia, 30329, United States

  • Children's Hospital at Montefiore (MRD HCT)

    NOT_YET_RECRUITING

    The Bronx, New York, 10467, United States

  • Children's Hospital at Montefiore (NT-DMT)

    RECRUITING

    The Bronx, New York, 10467, United States

  • Children's Hospital of Philadelphia (MRD-HCT)

    RECRUITING

    Philadelphia, Pennsylvania, 19104, United States

  • Children's National Hospital (MRD-HCT)

    RECRUITING

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

  • Children's of Alabama (MRD-HCT)

    RECRUITING

    Birmingham, Alabama, 35294, United States

  • Children's of Alabama (NT-DMT)

    NOT_YET_RECRUITING

    Birmingham, Alabama, 35294, United States

  • Cohen's Children Hospital (NT-DMT)

    NOT_YET_RECRUITING

    Queens, New York, 11040, United States

  • Columbia Presbytarian (NT-DMT)

    NOT_YET_RECRUITING

    New York, New York, 10032, United States

  • Comer Children's Hospital (MRD-HCT)

    RECRUITING

    Chicago, Illinois, 60637, United States

  • HSC Winnipeg Children's Hospital/University of Manitoba (MRD-HCT)

    RECRUITING

    Winnipeg, Manitoba, R3E 0V9, Canada

  • Hackensack University Hospital (MRD-HCT)

    RECRUITING

    Hackensack, New Jersey, 07601, United States

  • Nationwide Children's Hospital (NT-DMT)

    NOT_YET_RECRUITING

    Columbus, Ohio, 43205, United States

  • Nemours Children's Hospital, Delaware (MRD-HCT)

    RECRUITING

    Wilmington, Delaware, 19803, United States

  • Oklahoma Children's Hospital (MRD-HCT)

    NOT_YET_RECRUITING

    Oklahoma City, Oklahoma, 73104, United States

  • Riley Children's Hospital (MRD-HCT)

    RECRUITING

    Indianapolis, Indiana, 46202, United States

  • Riley's Children Hospital (NT-DMT)

    NOT_YET_RECRUITING

    Indianapolis, Indiana, 46202, United States

  • Roswell Park (MRD-HCT)

    RECRUITING

    Buffalo, New York, 14203, United States

  • St Jude Children Hospital (NT-DMT)

    NOT_YET_RECRUITING

    Memphis, Tennessee, 38105, United States

  • St. Jude Children's Research Hospital (MRD-HCT)

    RECRUITING

    Memphis, Tennessee, 38105, United States

  • Texas Children's Hopsital (NT-DMT)

    NOT_YET_RECRUITING

    Houston, Texas, 77030, United States

  • Texas Children's Hospital (MRD-HCT)

    RECRUITING

    Houston, Texas, 77030, United States

  • The Hospital for Sick Children (MRD-HCT)

    NOT_YET_RECRUITING

    Toronto, Ontario, ON M5G 1E8, Canada

  • UNC Children's Hospital (MRD HCT)

    NOT_YET_RECRUITING

    Chapel Hill, North Carolina, 27514, United States

  • UNC Children's Hospital (NT-DMT)

    NOT_YET_RECRUITING

    Chapel Hill, North Carolina, 27599., United States

  • UT San Antonio (NT-DMT)

    NOT_YET_RECRUITING

    San Antonio, Texas, 78229, United States

  • Universite de Montreal / Ste Justine (MRD HCT)

    NOT_YET_RECRUITING

    Montreal, Quebec, Canada

  • University of Rochester (MRD-HCT)

    NOT_YET_RECRUITING

    Rochester, New York, 14642, United States

  • University of Rochester (NT-DMT)

    NOT_YET_RECRUITING

    Rochester, New York, 14642, United States

  • Wahington Univ in St Louis (NT-DMT)

    NOT_YET_RECRUITING

    St Louis, Missouri, 63130, United States

  • Washington University in St Louis (MRD-HCT)

    NOT_YET_RECRUITING

    St Louis, Missouri, 63130, United States

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