Hereditary persistence of fetal hemoglobin-sickle cell disease syndrome

Advocacy intelligence hub — real-time data for patient organizations

View full disease page →Search clinical trials →

At a Glance

Live from database

1FDA treatments

1Recruiting trials

Regulatory Watchboard

10 events

Jan 2026Cardiac Magnetic Resonance - PROgnostic HEart Scar for Sudden Cardiac Death Prediction StudY

Beijing Anzhen Hospital

TrialRECRUITING

Dec 2025Targeting the Pathophysiology of Sickle Cell-Related Kidney Disease Using the SGLT2 Inhibitors, Empagliflozin

University of Illinois at Chicago — PHASE2

TrialNOT YET RECRUITING

Aug 2025Comparative Effectiveness of Carvedilol Versus Metoprolol Succinate in Heart Failure Patients With an Implantable Cardioverter Defibrillator

University of Rochester — PHASE4

TrialRECRUITING

Apr 2025Acute Oral Ketone Monoester Supplementation and Resting-state Brain Connectivity

University Department of Geriatric Medicine FELIX PLATTER — NA

TrialRECRUITING

Mar 2025Comparative Effectiveness of Prophylactic ICD Versus Non-ICD Therapy

University of Rochester — NA

TrialRECRUITING

Feb 2025The OSIRIS ECPR Trial

General University Hospital, Prague — NA

TrialNOT YET RECRUITING

Jan 2025Validation of Sudden Cardiac Arrest Risk Factors in Patients With CAD

Tampere Heart Hospital

TrialRECRUITING

Dec 2024Effectiveness of Nontraditional Hydroxyurea Algorithms: Novel and Clinical Evaluations (ENHANCE)

Children's Hospital Medical Center, Cincinnati — PHASE4

TrialRECRUITING

Nov 2024Italian Adaptation and Validation of Functional and Behavioural Scales for Subjective Cognitive Decline, Mild Cognitive Impairment and Mild Dementia.

Casa di Cura IGEA

TrialRECRUITING

Apr 2024MAgnetic Resonance Imaging-guided implanTation of Cardioverter DEFibrillators

Central Hospital, Nancy, France — NA

TrialNOT YET RECRUITING

Data from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.

Financial Assistance

FINANCIAL LANDSCAPE SUMMARY

0

Total programs

No financial assistance programs currently listed for Hereditary persistence of fetal hemoglobin-sickle cell disease syndrome.
Check the disease page for updates →

Approved Treatments

1 FDA-approved

Siklos

(hydroxycarbamide (hydroxyurea))Orphan drug

Theravia Pharma

Antimetabolite [EPC]

12.1 Mechanism of Action The precise mechanism by which hydroxyurea produces its cytotoxic and cytoreductive effects is not known. However, various st...

Approved Dec 2017FDA label ↗

View full treatment details on disease page →

Clinical Trial Landscape

1 active trial

1Phase 4

1Total recruiting

Search clinical trials for Hereditary persistence of fetal hemoglobin-sickle cell disease syndrome →

Recent News & Research

No recent news articles indexed yet for Hereditary persistence of fetal hemoglobin-sickle cell disease syndrome.
Search PubMed for Hereditary persistence of fetal hemoglobin-sickle cell disease syndrome →

Browse all Hereditary persistence of fetal hemoglobin-sickle cell disease syndrome news →

Specialist Network

Top 6 by expertise

Jason D Roberts, MD MAS

McMaster University and Population Health Research Institute

Score 82 trials7 pubs

Ricardo Cruciani, MD, PhD

Beth Israel Medical Center

Score 42 trials

Amy J Sehnert, MD, MD

Verinata Health, Inc.

📍 PALO ALTO, CA

Score 43 trials1 pub

María del Mar Mañú Pereira, PhD

Vall d'Hebron Institut de Recerca, Barcelona (Spain) and ERN-EuroBloodNet

Pablo Velasco Puyó, MD

Vall d'Hebron University Hospital, Barcelona (Spain)

Sabine Krumm, PD

University Department of Geriatric Medicine FELIX PLATTER

View all Hereditary persistence of fetal hemoglobin-sickle cell disease syndrome specialists →

Quick Actions

View Disease Page

Full profile, treatments, community

Search Clinical Trials

Find recruiting studies now

Find Specialists

Ranked by expertise & trials

Financial Assistance

Copay cards, PAPs, grants

Latest News

Research, approvals & updates

Browse All Diseases

11,000+ rare disease profiles