Sickle Cell · Topic guide
Active Sickle Cell Clinical Trials Recruiting Black Patients
More than 400 active SCD clinical trials are listed at ClinicalTrials.gov — including the post-approval confirmatory trials for Casgevy and Lyfgenia, next-generation gene-editing approaches, and anti-P-selectin therapies following the 2023 Adakveo withdrawal.
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Where active SCD trials are listed
The primary registry is ClinicalTrials.gov, the federally operated trial registry. As of 2026, it lists more than 400 active SCD trials, including:
- Post-approval confirmatory studies for Casgevy and Lyfgenia, enrolling through the authorized treatment centers
- Next-generation gene-editing approaches — base editors, prime editors, alternative CRISPR targets
- Anti-P-selectin antibody therapies (following the crizanlizumab withdrawal and ongoing review)
- Hydroxyurea optimization studies — dose escalation, HbF response prediction
- Transfusion-burden reduction protocols for chronically transfused patients
- Behavioral-health and pain-management interventions
SCDAA's clinical-trial finder is a curated patient-facing overlay of ClinicalTrials.gov data.
How to evaluate whether a trial is right for you
Before enrolling, ask the study team:
- What is the study design? (Randomized? Placebo-controlled? Single-arm? Expanded access?)
- What are the inclusion and exclusion criteria? Many SCD trials require a minimum crisis count and exclude patients on certain baseline therapies.
- What are the known and unknown risks? Gene-therapy studies, in particular, require myeloablative conditioning with long-term cancer-risk monitoring.
- Is travel and lodging covered? NHLBI-funded studies often cover reasonable travel costs; industry-sponsored studies vary.
- What happens when the study ends? Some studies include extended follow-up; others end at a fixed date.
Black patient representation in SCD trials
Because SCD in the U.S. is roughly 90% Black, the pivotal trials for every FDA-approved SCD therapy have been majority-Black trials — one of the only major therapeutic categories where that is the case. The Emmes Company coordinating center for NHLBI-SCDIC has published best-practice guidelines for equitable trial enrollment; comprehensive centers use them.
Our ClinicalTrials.gov snapshot
We refresh a snapshot of recruiting SCD trials weekly from the ClinicalTrials.gov v2 API via the ingest_ct_gov_sickle_cell management command — the live registry is always the authoritative source.
For Black families
SCD is one of the rare disease areas where Black enrollment in clinical trials is the norm rather than the exception — the disease itself ensures it. That makes SCD trials a unique entry point for Black patients and families thinking about trial participation more broadly. The Emmes Company coordinating center for NHLBI-SCDIC has published best-practice guidelines for culturally competent trial enrollment that are now templates across hematology.
More sickle cell topics
Comprehensive centers
What a Sickle Cell Comprehensive Care Center Actually Is — and How to Find One
Newborn screening
Sickle Cell Newborn Screening — Every State Screens, What Happens Next
Treatments
Sickle Cell Disease Treatments — Hydroxyurea to CRISPR Gene Therapy
Adult transition
The Sickle Cell Adolescent-to-Adult Transition — Where Mortality Peaks
ER pain crisis
Sickle Cell Pain Crisis in the ER — How to Advocate for Proper Treatment
References
- NHLBI, "Evidence-Based Management of Sickle Cell Disease" (2014 expert panel report): nhlbi.nih.gov.
- American Society of Hematology 2020 SCD Clinical Practice Guidelines: hematology.org.
- CDC Sickle Cell Data Collection program: cdc.gov/ncbddd/hemoglobinopathies/scdc.
- Sickle Cell Disease Association of America: sicklecelldisease.org.
- ClinicalTrials.gov active sickle cell trials: clinicaltrials.gov search.
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