Onchocerciasis

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3Active trials51Specialists8Treatment centers

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UniteRare data is sourced from FDA.gov, ClinicalTrials.gov, Orphanet, OMIM, and NORD.
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Overview

Onchocerciasis, commonly known as river blindness, is a parasitic disease caused by the filarial nematode Onchocerca volvulus. The infection is transmitted to humans through the repeated bites of infected blackflies (Simulium species), which breed near fast-flowing rivers and streams in tropical regions. The disease is endemic primarily in sub-Saharan Africa, with smaller foci in Latin America and Yemen. Onchocerciasis predominantly affects the skin, eyes, and lymphatic system. When adult female worms residing in subcutaneous nodules (onchocercomas) release millions of microfilariae, these larvae migrate through the skin and eyes, provoking intense inflammatory responses. Key clinical manifestations include severe pruritus (itching), chronic dermatitis with skin changes (such as depigmentation known as "leopard skin," skin atrophy, and lichenification), subcutaneous nodules, and progressive ocular disease. Eye involvement can affect both the anterior and posterior segments, leading to punctate keratitis, sclerosing keratitis, iridocyclitis, optic neuritis, chorioretinitis, and ultimately irreversible blindness. Onchocerciasis is the second leading infectious cause of blindness worldwide. The primary treatment is ivermectin (Mectizan), which effectively kills microfilariae and suppresses their production by adult worms, though it does not kill adult worms outright. Ivermectin is administered as a single oral dose every 6 to 12 months, often through mass drug administration programs. Doxycycline, an antibiotic targeting the Wolbachia endosymbiont bacteria essential for worm survival and reproduction, has shown efficacy as a macrofilaricidal treatment when given over 4 to 6 weeks. Surgical excision of palpable nodules (nodulectomy) may also be performed. Large-scale community-directed treatment with ivermectin, coordinated by programs such as the African Programme for Onchocerciasis Control (APOC), has significantly reduced disease burden in endemic areas.

Age of Onset

Variable

Can begin at different ages, from infancy through adulthood

Orphanet ↗NORD ↗

FDA & Trial Timeline

3 events
Apr 2024Development of a New Rapid Diagnostic Test to Support Onchocerciasis Elimination

Bioaster — NA

TrialRECRUITING
Aug 2021Emodepside Phase II Trial for Treatment of Onchocerciasis

Drugs for Neglected Diseases — PHASE2

TrialACTIVE NOT RECRUITING
May 2021Safety and Efficacy of Annual or Biannual Doses of Moxidectin or Ivermectin for Onchocerciasis

Medicines Development for Global Health — PHASE3

TrialACTIVE NOT RECRUITING

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

Treatments

No FDA-approved treatments are currently listed for Onchocerciasis.

3 clinical trialsare actively recruiting — trials can provide access to cutting-edge therapies.

View clinical trials →

Clinical Trials

3 recruitingView all trials with filters →
Phase 31 trial
Safety and Efficacy of Annual or Biannual Doses of Moxidectin or Ivermectin for Onchocerciasis
Phase 3
Active
PI: Tony Ukety, MD, DO, MPH (Centre de Recherche en Maladies Tropicales de l'It) · Sites: Rethy, Ituri · Age: 1299 yrs
Phase 21 trial
Emodepside Phase II Trial for Treatment of Onchocerciasis
Phase 2
Active
· Sites: Kimpese, Bas-Congo Province; Masi-Manimba, Kwilu +1 more · Age: 1865 yrs
N/A1 trial
Development of a New Rapid Diagnostic Test to Support Onchocerciasis Elimination
N/A
Actively Recruiting
PI: Philippe LEISSNER (Bioaster) · Sites: Yaoundé · Age: 1899 yrs

Specialists

Showing 25 of 51View all specialists →
SJ
Said Jongo
Specialist
PI on 1 active trial
FP
Fatorma K Bolay, PhD
Specialist
PI on 1 active trial
CP
Christopher King, MD PHD
Specialist
PI on 1 active trial
BP
Bruno Mmbando, PhD
Specialist
PI on 1 active trial
DP
Daniel Paris
ASHBURN, VA
Specialist
PI on 1 active trial5 Onchocerciasis publications
RC
R Colebunders
Specialist
2 Onchocerciasis publications
JF
Joseph Nelson Siewe Fodjo
Specialist
2 Onchocerciasis publications
JF
J N Siewe Fodjo
Specialist
2 Onchocerciasis publications
GC
G Van Cutsem
Specialist
2 Onchocerciasis publications
RC
Robert Colebunders
Specialist
5 Onchocerciasis publications
MB
María-Gloria Basáñez
Specialist
2 Onchocerciasis publications
AH
Amber Hadermann
Specialist
4 Onchocerciasis publications
FM
François MISSAMOU, MD
Specialist
PI on 1 active trial
PP
Peter U Fischer, PhD
Specialist
PI on 2 active trials
DP
Daniel A Boakye, PhD
Specialist
PI on 1 active trial
GM
Gary J Weil, MD
BELLEVUE, WA
Specialist
PI on 3 active trials1 Onchocerciasis publication
NM
Nicholas O Opoku, MD
Specialist
PI on 1 active trial
JK
Joseph KAMGNO
Specialist
PI on 1 active trial
MM
Michel Mandro, MD
Specialist
PI on 1 active trial
GM
Gary Weil, MD
BELLEVUE, WA
Specialist
PI on 5 active trials1 Onchocerciasis publication
PP
Peter Fischer, PhD
Specialist
PI on 1 active trial
TM
Tony Ukety, MD, DO, MPH
Specialist
PI on 2 active trials
NM
Nicholas Opoku, MD
Specialist
PI on 1 active trial
JM
James W Kazura, MD
CLEVELAND, OH
Specialist
PI on 2 active trials
BP
Benjamin Koudou, PhD
Specialist
PI on 1 active trial

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Travel Grants

No travel grants are currently matched to Onchocerciasis.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Onchocerciasis

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Caregiver Resources

NORD Caregiver Resources

Support, advocacy, and financial assistance for caregivers of rare disease patients.

Mental Health Support

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Family & Caregiver Grants

Financial assistance programs specifically for caregivers of rare disease patients.

Social Security Disability

Learn how rare disease patients may qualify for SSDI/SSI benefits.

Common questions about Onchocerciasis

What is Onchocerciasis?

Onchocerciasis, commonly known as river blindness, is a parasitic disease caused by the filarial nematode Onchocerca volvulus. The infection is transmitted to humans through the repeated bites of infected blackflies (Simulium species), which breed near fast-flowing rivers and streams in tropical regions. The disease is endemic primarily in sub-Saharan Africa, with smaller foci in Latin America and Yemen. Onchocerciasis predominantly affects the skin, eyes, and lymphatic system. When adult female worms residing in subcutaneous nodules (onchocercomas) release millions of microfilariae, these la

Are there clinical trials for Onchocerciasis?

Yes — 3 recruiting clinical trials are currently listed for Onchocerciasis on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.

Which specialists treat Onchocerciasis?

25 specialists and care centers treating Onchocerciasis are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.