Back to search results

Long-Term Follow-Up for Hemoglobin Disorders After Transplant or Gene Therapy

This observational study is looking at the long-term health and well-being of individuals with hemoglobin disorders (blood conditions like sickle cell anemia or thalassemia) who have received either a hematopoietic stem cell transplant (a procedure to replace unhealthy blood-forming cells) or gene therapy (a treatment that modifies cells). The study aims to understand any long-term effects of these treatments, including clinical and psychosocial outcomes, for up to 15 years after the procedure. You may be able to join if you have a hemoglobin disorder and have had, or are planning to have, one of these treatments within the last 15 years. This study is currently unclear on its recruitment status.

Study design
This is an observational study that plans to enroll 200 participants. It is a prospective, longitudinal study, meaning it follows participants over time.
What's involved
Not specified in the trial record.
Compensation
Not stated in the trial record.
Follow-up
Participants will be followed for long-term clinical and psychosocial outcomes, and late effects, for up to 15 years after their transplant or gene therapy.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.

NCT06646640

Long Term Follow-Up Study for Individuals With Hemoglobin Disorders After Hematopoietic Cell Transplant or Gene Therapy

Recruiting
Not specifiedAll AgesObservational
St. Jude Children's Research Hospital
~200 participants
Updated 2025-08-07 on ClinicalTrials.gov

At a glance

Recruiting sites
1 of 1 listed site is recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
To provide ongoing review of long-term clinical and psychosocial outcomes and late effects of hematopoietic stem cell transplant and gene therapy recipients at St. Jude Children's Research Hospital.
Measured over long term follow up. Can also be stated as "up to 15 years after transplant"

Conditions

Hemoglobin Disorder

Explore related trials

Hemoglobinopathy

Where it's being run

1 sites across 1 states
Tennessee1

Study leadership

  • Akshay Sharma, MD · PRINCIPAL_INVESTIGATOR · St. Jude Children's Research Hospital

Who to contact

Akshay Sharma, MD
[email protected]
8662785833
Email the study team

Opens a ready-to-send draft in your own email app — review before sending.

Do you actually qualify for this trial?

Add a private profile and we'll compare every criterion below against your situation — and tell you which ones are met, uncertain, or excluding.

Check eligibility for this trial ~2 min · HIPAA-protected · delete anytime
Eligibility criteria

Inclusion

Receipt, or planned receipt, of an allogeneic HSCT or infusion of genetically modified autologous cells for hemoglobin disorders within 15 years prior to enrollment

Exclusion

Inability or unwillingness of research participant and/or legal guardian/ representative to provide written informed consent.

What this trial measures

  • To provide ongoing review of long-term clinical and psychosocial outcomes and late effects of hematopoietic stem cell transplant and gene therapy recipients at St. Jude Children's Research Hospital.long term follow up. Can also be stated as "up to 15 years after transplant"