Overview
Maturity-Onset Diabetes of the Young, commonly known as MODY, is a rare inherited form of diabetes that is different from both Type 1 and Type 2 diabetes. It is caused by a change (mutation) in a single gene that affects how the pancreas produces insulin — the hormone that controls blood sugar levels. Because of this gene change, the pancreas cannot make enough insulin, leading to higher-than-normal blood sugar levels. MODY is often diagnosed in children, teenagers, or young adults, usually before the age of 25, though some people are not diagnosed until later in life. There are at least 14 different subtypes of MODY, each caused by a mutation in a different gene. The most common types are MODY 2 (caused by the GCK gene) and MODY 3 (caused by the HNF1A gene). Symptoms can be mild and easy to miss, which means many people are misdiagnosed with Type 1 or Type 2 diabetes for years. Common signs include mildly elevated blood sugar, increased thirst, frequent urination, and fatigue. The good news is that many forms of MODY respond well to specific treatments. For example, MODY 3 often responds to low-dose sulfonylurea tablets rather than insulin injections. Getting the right diagnosis through genetic testing is very important because it can change treatment completely and improve quality of life.
Also known as:
Key symptoms:
Higher-than-normal blood sugar levelsIncreased thirstFrequent urinationFatigue or low energyBlurred visionSlow healing of cuts or infectionsMild or no symptoms in some subtypes (especially MODY 2)Family history of diabetes across multiple generationsDiabetes diagnosed at a young age (under 25)Not needing insulin despite a diabetes diagnosisUnexplained weight loss in some casesRecurrent urinary tract infections in some subtypes
Clinical phenotype terms (27)— hover any for plain English
Autosomal dominant
Passed on from just one parent; each child has about a 50% chance of inheriting it
Variable
Can begin at different ages, from infancy through adulthood
FDA & Trial Timeline
10 eventsRecep Turan — NA
University of Massachusetts, Worcester — NA
University of Sao Paulo — NA
University of South Carolina
Eli Lilly and Company — PHASE3
Corxel Pharmaceuticals — PHASE2
University of Colorado, Denver — EARLY_PHASE1
AdipoPharma LLC — PHASE1
Joslin Diabetes Center — NA
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for MODY.
8 clinical trialsare actively recruiting — trials can provide access to cutting-edge therapies.
View clinical trials →Rare Disease Specialist
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to MODY.
Community
No community posts yet. Be the first to share your experience with MODY.
Start the conversation →Latest news about MODY
Disease timeline:
New recruiting trial: The YMCA Healthy Lifestyle Program for Prediabetes
A new clinical trial is recruiting patients for MODY
New recruiting trial: Optimized Diagnosis and Precision Medicine of MODY
A new clinical trial is recruiting patients for MODY
New recruiting trial: Liraglutide Treatment in Patients With Maturity-onset Diabetes of the Young (MODY)
A new clinical trial is recruiting patients for MODY
New recruiting trial: China Monogenic Diabetes Registry
A new clinical trial is recruiting patients for MODY
New recruiting trial: Deploying Digital Prosthetic Interface Technology and Exercise in Dysvascular Amputees
A new clinical trial is recruiting patients for MODY
New recruiting trial: Paraoxonase and HDL Qualities in Glycaemia and Inflammation
A new clinical trial is recruiting patients for MODY
New recruiting trial: A Study of PATAS Trifluoroacetate Using Single Ascending Doses in Healthy Volunteers
A new clinical trial is recruiting patients for MODY
New recruiting trial: Leveraging Videos and Community Health Workers to Address Social Determinants of Health in Immigrants
A new clinical trial is recruiting patients for MODY
New recruiting trial: Cohort Study on Plant-based Diets (COPLANT Study)
A new clinical trial is recruiting patients for MODY
New recruiting trial: Real-world Effects of Using Intermittently Scanned Continuous Glucose Monitoring and Pharmacist-led Coaching on the Management of Type 2 Diabetes Among Adults Not Using Insulin (REAL isCGM T2D)
A new clinical trial is recruiting patients for MODY
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.
Questions for your doctor
Bring these to your next appointment
- Q1.Which specific type of MODY do I have, and what gene is involved?,Do I still need insulin, or can I switch to tablets based on my MODY type?,Should my parents, siblings, and children be tested for the same gene mutation?,What blood sugar levels should I aim for, and how often should I check them?,What are the long-term risks of complications for my specific MODY type?,Are there any dietary changes I should make, or is my current diet fine?,How often should I have check-ups, and what tests should be done at each visit?
Common questions about MODY
What is MODY?
Maturity-Onset Diabetes of the Young, commonly known as MODY, is a rare inherited form of diabetes that is different from both Type 1 and Type 2 diabetes. It is caused by a change (mutation) in a single gene that affects how the pancreas produces insulin — the hormone that controls blood sugar levels. Because of this gene change, the pancreas cannot make enough insulin, leading to higher-than-normal blood sugar levels. MODY is often diagnosed in children, teenagers, or young adults, usually before the age of 25, though some people are not diagnosed until later in life. There are at least 14 d
How is MODY inherited?
MODY follows a autosomal dominant inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
Are there clinical trials for MODY?
Yes — 8 recruiting clinical trials are currently listed for MODY on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat MODY?
25 specialists and care centers treating MODY are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.