Leprosy

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ORPHA:548OMIM:246300A30.0A30.4A30.5
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6Active trials40Specialists8Treatment centers

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

Leprosy, also known as Hansen's disease, is a chronic infectious disease caused by the obligate intracellular bacterium Mycobacterium leprae (and in some cases Mycobacterium lepromatosis). While it is an infectious disease rather than a purely genetic disorder, host genetic susceptibility plays a significant role in determining whether an exposed individual develops disease and which clinical form manifests. The disease primarily affects the skin, peripheral nerves, mucosa of the upper respiratory tract, and eyes. It has a remarkably long incubation period, typically ranging from 3 to 5 years but sometimes extending to 20 years. Leprosy presents across a clinical spectrum classified by the Ridley-Jopling system. At one end, tuberculoid leprosy (paucibacillary) features well-defined, hypopigmented or erythematous skin lesions with loss of sensation, thickened peripheral nerves, and a strong cell-mediated immune response limiting bacterial growth. At the other end, lepromatous leprosy (multibacillary) is characterized by widespread, symmetrical skin nodules (lepromas), diffuse skin infiltration, nasal congestion, and high bacterial loads due to poor cell-mediated immunity. Borderline forms exist between these poles. Nerve damage leads to sensory loss, muscle weakness, and deformities of the hands, feet, and face. Complications include plantar ulcers, claw hand, foot drop, lagophthalmos, and blindness. Immunological reactions (Type 1 reversal reactions and Type 2 erythema nodosum leprosum) can cause acute nerve damage and systemic inflammation. Treatment is highly effective with multidrug therapy (MDT) as recommended by the World Health Organization, combining dapsone, rifampicin, and clofazimine. Paucibacillary disease is treated for 6 months and multibacillary disease for 12 months. Early diagnosis and treatment prevent disability. Genetic susceptibility loci have been identified in several genes including HLA class II genes, TLR1, TLR2, PARK2/PACRG, NOD2, LRRK2, RIPK2, and others, underscoring the multifactorial nature of disease susceptibility. Despite being curable, leprosy remains endemic in parts of India, Brazil, Indonesia, and several other countries, with approximately 200,000 new cases reported annually worldwide.

Clinical phenotype terms— hover any for plain English:

Acute episodes of neuropathic symptomsHP:0003489Acral ulcerationHP:0006121Impaired temperature sensationHP:0010829Dissociated sensory lossHP:0010835Entrapment neuropathyHP:0012181Enlarged peripheral nerveHP:0012645Hypopigmented maculeHP:0020073Anti-sphingolipid antibody positivityHP:0034102Penetrating foot ulcersHP:0001026
Inheritance

Multifactorial

Caused by a mix of several genes and environmental factors

Age of Onset

Variable

Can begin at different ages, from infancy through adulthood

Orphanet ↗OMIM ↗NORD ↗

FDA & Trial Timeline

10 events
May 2026Epidemiological, Clinical, Diagnostic, and Therapeutic Characteristics of Hansen's Disease in Costa Rica (2018-2025)

Caja Costarricense de Seguro Social

TrialNOT YET RECRUITING
Jan 2026Efficacy and Safety Study of Dovramilast in People With Leprosy Type 2 Reaction

Medicines Development for Global Health — PHASE2

TrialNOT YET RECRUITING
Nov 2025Integrating Mental Health Into Neglected Tropical Disease Care in Ghana

Liverpool School of Tropical Medicine — NA

TrialNOT YET RECRUITING
Jun 2025Leprosy Active Searching Trial in Brazil

Hospital Alemão Oswaldo Cruz — NA

TrialRECRUITING
Mar 2025Trauma-Informed Motivational Interviewing in Rural Dwelling Samples

Alexandria University — NA

TrialRECRUITING
Jan 2025Trial LEP-F1 + GLA-SE in Healthy Adult in Areas Endemic for Leprosy

The Immunobiological Technology Institute (Bio-Manguinhos) / Oswaldo Cruz Foundation (Fiocruz) — PHASE1

TrialNOT YET RECRUITING
Dec 2024Rab 32 Gene Polymorphisms as a Prognostic Factor in Leprosy Patients

South Valley University — NA

TrialRECRUITING
Jul 2024TGF β 1 Expression Related Gene Polymorphism

Aswan University

TrialRECRUITING
Mar 2023Bedaquiline Enhanced Post ExpOsure Prophylaxis for Leprosy

Institute of Tropical Medicine, Belgium — PHASE3

TrialRECRUITING
Jan 2023Methotrexate and Prednisolone Study in Erythema Nodosum Leprosum

London School of Hygiene and Tropical Medicine — NA

TrialACTIVE NOT RECRUITING

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

Treatments

No FDA-approved treatments are currently listed for Leprosy.

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

View clinical trials →

Clinical Trials

6 recruitingView all trials with filters →
Phase 31 trial
Bedaquiline Enhanced Post ExpOsure Prophylaxis for Leprosy
Phase 3
Actively Recruiting
PI: Younoussa Assoumani (Damien Foundation Comoros) · Sites: Moroni · Age: 299 yrs
Phase 21 trial
Efficacy and Tolerability of Adjunct Metformin for Multibacillary Leprosy
Phase 2
Actively Recruiting
PI: Hardiyanto Soebono, Prof.Dr.dr (Center of Tropical Medicine, University of Gadjah ) · Sites: Tangerang, Banten; Makassar, South Sulawesi +4 more · Age: 1865 yrs
N/A3 trials
Leprosy Active Searching Trial in Brazil
N/A
Actively Recruiting
PI: Rosa C Lucchetta, PhD (Hospital Alemão Oswaldo Cruz) · Sites: São Paulo, São Paulo
Rab 32 Gene Polymorphisms as a Prognostic Factor in Leprosy Patients
N/A
Actively Recruiting
PI: Eisa Mohammed Hegazy, Assist. Prof (Dermatology, Venereology and Andrology. Faculty of) · Sites: Qina · Age: 560 yrs
Novel Interventions and Diagnostic Tests for Leprosy
N/A
Actively Recruiting
PI: Annemieke Geluk, PhD (Academisch Ziekenhuis Leiden (LUMC)) · Sites: Nilphamari · Age: 599 yrs
Other1 trial
TGF β 1 Expression Related Gene Polymorphism
Actively Recruiting
PI: Moustafa Adam Ali El Taieb, Professor (Dermatology, Venereology and Andrology. Faculty of) · Sites: Aswān · Age: 1850 yrs

Specialists

Showing 25 of 40View all specialists →
CA
Charlotte Avanzi
Specialist
3 Leprosy publications
AW
Alaine K Warren
ROCKVILLE, MD
Specialist
2 Leprosy publications
AG
Annemieke Geluk
Specialist
1 Leprosy publication
PS
Pushpendra Singh
Specialist
1 Leprosy publication
RP
Roberta Olmo Pinheiro
Specialist
1 Leprosy publication
TN
Thuan H Nguyen
Specialist
1 Leprosy publication
MG
Marlous L Grijsen
Specialist
1 Leprosy publication
MJ
Mary Jackson
Specialist
2 Leprosy publications
JS
John S Spencer
Specialist
2 Leprosy publications
CF
Carlos Franco-Paredes
AURORA, CO
Specialist
2 Leprosy publications
MT
Maria Angela Bianconcini Trindade
Specialist
2 Leprosy publications
SL
Saba M Lambert
Specialist
1 Leprosy publication
LF
Luis Alberto Ribeiro Froes
Specialist
2 Leprosy publications
MS
Mirian Nacagami Sotto
Specialist
2 Leprosy publications
SW
Stephen L Walker
Specialist
1 Leprosy publication
IM
Ian A Myles, M.D.
Bethesda, Maryland
Specialist

Rare Disease Specialist

PI on 3 active trials
DA
Daniel Andrade
Specialist
PI on 1 active trial
BJ
Bouke de Jong
Specialist
PI on 1 active trial
MF
Marisa CR Fonseca
MILFORD, MA
Specialist
PI on 1 active trial
YA
Younoussa Assoumani
Specialist
PI on 2 active trials
RH
Ronald Hall
Specialist
PI on 2 active trials
DL
Diana NJ Lockwood
Specialist
PI on 3 active trials
IG
Isabela M Bernardes Goulart
Specialist
PI on 1 active trial
CD
Claudio G Salgado, Dr
Specialist
PI on 1 active trial
RL
Rosa C Lucchetta
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 Leprosy.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Leprosy

Disease timeline:

New recruiting trial: Bedaquiline Enhanced Post ExpOsure Prophylaxis for Leprosy

A new clinical trial is recruiting patients for Leprosy

New recruiting trial: TGF β 1 Expression Related Gene Polymorphism

A new clinical trial is recruiting patients for Leprosy

New recruiting trial: Leprosy Active Searching Trial in Brazil

A new clinical trial is recruiting patients for Leprosy

New recruiting trial: Rab 32 Gene Polymorphisms as a Prognostic Factor in Leprosy Patients

A new clinical trial is recruiting patients for Leprosy

New recruiting trial: Trauma-Informed Motivational Interviewing in Rural Dwelling Samples

A new clinical trial is recruiting patients for Leprosy

New recruiting trial: Novel Interventions and Diagnostic Tests for Leprosy

A new clinical trial is recruiting patients for Leprosy

New recruiting trial: Efficacy and Tolerability of Adjunct Metformin for Multibacillary Leprosy

A new clinical trial is recruiting patients for Leprosy

Caregiver Resources

NORD Caregiver Resources

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

Mental Health Support

Rare disease caregiving can be isolating. Connect with counseling and peer support.

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 Leprosy

What is Leprosy?

Leprosy, also known as Hansen's disease, is a chronic infectious disease caused by the obligate intracellular bacterium Mycobacterium leprae (and in some cases Mycobacterium lepromatosis). While it is an infectious disease rather than a purely genetic disorder, host genetic susceptibility plays a significant role in determining whether an exposed individual develops disease and which clinical form manifests. The disease primarily affects the skin, peripheral nerves, mucosa of the upper respiratory tract, and eyes. It has a remarkably long incubation period, typically ranging from 3 to 5 years

How is Leprosy inherited?

Leprosy follows a multifactorial inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

Are there clinical trials for Leprosy?

Yes — 6 recruiting clinical trials are currently listed for Leprosy on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.

Which specialists treat Leprosy?

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