3-hydroxyacyl-CoA dehydrogenase deficiency

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ORPHA:309127
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2Active trials16Specialists8Treatment centers

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

3-hydroxyacyl-CoA dehydrogenase deficiency (also called HAD deficiency or M/SCHAD deficiency) is a rare inherited metabolic disorder that affects the body's ability to break down certain fats (fatty acids) for energy. The condition is caused by problems with an enzyme called 3-hydroxyacyl-CoA dehydrogenase, which plays a key role in a process called fatty acid oxidation — the way your body converts fat into usable energy, especially during periods of fasting or illness. When this enzyme does not work properly, the body cannot fully break down medium- and short-chain fatty acids. This leads to a dangerous buildup of partially processed fats and a shortage of energy, particularly for organs like the brain, heart, and liver. One of the most serious consequences is hypoglycemia (very low blood sugar), which can occur when a person goes without food for too long or during illness. Affected individuals, usually infants or young children, may experience episodes of lethargy, vomiting, seizures, and in severe cases, life-threatening metabolic crises. Some patients also develop hyperinsulinism, meaning the pancreas releases too much insulin, which further drives blood sugar dangerously low. Treatment focuses on preventing low blood sugar through frequent feeding, avoiding prolonged fasting, and sometimes using medications to manage hyperinsulinism. With early diagnosis and careful management, many patients can do well, but the condition requires lifelong monitoring and dietary vigilance.

Key symptoms:

Low blood sugar (hypoglycemia)Excessive sleepiness or lethargyVomitingSeizuresPoor feeding in infancyFailure to thrive or poor weight gainMuscle weakness or low muscle toneLiver enlargementEpisodes triggered by fasting or illnessIrritabilityExcessive insulin production (hyperinsulinism)Developmental delays if untreatedLoss of consciousness during metabolic crises

Inheritance

Autosomal recessive

Passed on when both parents carry the same gene change; often skips generations

Age of Onset

Infantile

Begins in infancy, roughly 1 month to 2 years old

Orphanet ↗NORD ↗

FDA & Trial Timeline

2 events
Feb 2023A Study to Determine the Effect of Triheptanoin Compared With Even-Chain MCT on MCEs in Pediatric Patients With LC-FAOD

Ultragenyx Pharmaceutical Inc — PHASE3

TrialACTIVE NOT RECRUITING
Nov 2021Long-Chain Fatty Acid Oxidation Disorders In-Clinic Disease Monitoring Program

Ultragenyx Pharmaceutical Inc

TrialACTIVE NOT RECRUITING

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

Treatments

No FDA-approved treatments are currently listed for 3-hydroxyacyl-CoA dehydrogenase deficiency.

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

View clinical trials →

Clinical Trials

2 recruitingView all trials with filters →
Phase 31 trial
A Study to Determine the Effect of Triheptanoin Compared With Even-Chain MCT on MCEs in Pediatric Patients With LC-FAOD
Phase 3
Active
PI: Medical Director (Ultragenyx Pharmaceutical Inc) · Sites: Prague; Freiburg im Breisgau +13 more · Age: 017 yrs
Other1 trial
Long-Chain Fatty Acid Oxidation Disorders In-Clinic Disease Monitoring Program
Active
PI: Medical Director (Ultragenyx Pharmaceutical Inc) · Sites: Phoenix, Arizona; San Francisco, California +14 more

Specialists

16 foundView all specialists →
GE
Gabriela Elizondo
AUSTIN, TX
Specialist
2 3-hydroxyacyl-CoA dehydrogenase deficiency publications
MH
Magdalena Hubert
Specialist
2 3-hydroxyacyl-CoA dehydrogenase deficiency publications
MG
Maciej Gawęcki
Specialist
2 3-hydroxyacyl-CoA dehydrogenase deficiency publications
HC
Hak Chung
Specialist
2 3-hydroxyacyl-CoA dehydrogenase deficiency publications
AG
Ashley Gregor
Specialist
2 3-hydroxyacyl-CoA dehydrogenase deficiency publications
KN
Ken K Nischal
Specialist
2 3-hydroxyacyl-CoA dehydrogenase deficiency publications
PY
Paul Yang
Specialist
2 3-hydroxyacyl-CoA dehydrogenase deficiency publications
LE
Lesley Everett
Specialist
2 3-hydroxyacyl-CoA dehydrogenase deficiency publications
CH
Cary O Harding
PORTLAND, OR
Specialist
2 3-hydroxyacyl-CoA dehydrogenase deficiency publications
GG
Garen Gaston
Specialist
2 3-hydroxyacyl-CoA dehydrogenase deficiency publications
DC
Dongseok Choi
Specialist
1 3-hydroxyacyl-CoA dehydrogenase deficiency publication
ES
Elaine Sim
BEAVERTON, OR
Specialist
1 3-hydroxyacyl-CoA dehydrogenase deficiency publication
AL
Alison Lau
PORTLAND, OR
Specialist
1 3-hydroxyacyl-CoA dehydrogenase deficiency publication
MG
Melanie B Gillingham
PORTLAND, OR
Specialist
4 3-hydroxyacyl-CoA dehydrogenase deficiency publications
JV
Jerry Vockley
PITTSBURGH, PA
Specialist
2 3-hydroxyacyl-CoA dehydrogenase deficiency publications

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 3-hydroxyacyl-CoA dehydrogenase deficiency.

Search all travel grants →NORD Financial Assistance ↗

Community

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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.

Questions for your doctor

Bring these to your next appointment

  • Q1.How long can my child safely go without eating, and does this change as they grow?,What should our emergency plan look like during illness, and when should we go to the hospital?,Does my child have hyperinsulinism, and if so, what treatment is recommended?,Will my child need any dietary supplements such as carnitine?,How often should we have follow-up appointments and blood tests?,Should other family members or future pregnancies be tested?,What should I tell my child's school or daycare about this condition?

Common questions about 3-hydroxyacyl-CoA dehydrogenase deficiency

What is 3-hydroxyacyl-CoA dehydrogenase deficiency?

3-hydroxyacyl-CoA dehydrogenase deficiency (also called HAD deficiency or M/SCHAD deficiency) is a rare inherited metabolic disorder that affects the body's ability to break down certain fats (fatty acids) for energy. The condition is caused by problems with an enzyme called 3-hydroxyacyl-CoA dehydrogenase, which plays a key role in a process called fatty acid oxidation — the way your body converts fat into usable energy, especially during periods of fasting or illness. When this enzyme does not work properly, the body cannot fully break down medium- and short-chain fatty acids. This leads to

How is 3-hydroxyacyl-CoA dehydrogenase deficiency inherited?

3-hydroxyacyl-CoA dehydrogenase deficiency follows a autosomal recessive inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does 3-hydroxyacyl-CoA dehydrogenase deficiency typically begin?

Typical onset of 3-hydroxyacyl-CoA dehydrogenase deficiency is infantile. Age of onset can vary across affected individuals.

Are there clinical trials for 3-hydroxyacyl-CoA dehydrogenase deficiency?

Yes — 2 recruiting clinical trials are currently listed for 3-hydroxyacyl-CoA dehydrogenase deficiency on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.

Which specialists treat 3-hydroxyacyl-CoA dehydrogenase deficiency?

16 specialists and care centers treating 3-hydroxyacyl-CoA dehydrogenase deficiency are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.