Overview
Goodman syndrome, also known as Acrocephalopolysyndactyly type IV (ACPS IV), is a very rare genetic condition that affects the development of the skull, hands, and feet before birth. The skull fuses too early (a condition called craniosynostosis), which can change the shape of the head and put pressure on the brain. At the same time, children with Goodman syndrome are born with extra fingers or toes (polydactyly) and fingers or toes that are fused together (syndactyly). These features together give the condition its full name, which means 'abnormal head shape with fused and extra digits.' The condition belongs to a group of disorders called acrocephalopolysyndactyly syndromes. Other features can include intellectual disability, low muscle tone, and differences in the face such as widely spaced eyes or a flat nasal bridge. Heart defects have also been reported in some individuals. Treatment focuses on managing each symptom individually. Surgery is often needed to correct skull shape and relieve brain pressure, and additional operations may be done on the hands and feet. There is no cure, but early intervention and a team of specialists can greatly improve quality of life and development for affected children.
Also known as:
Key symptoms:
Abnormally shaped or pointed head due to early skull fusion (craniosynostosis)Extra fingers or toes (polydactyly)Fused fingers or toes (syndactyly)Intellectual disability or developmental delaysLow muscle tone (floppiness in infancy)Widely spaced eyesFlat or broad nasal bridgeCongenital heart defects (in some cases)Short statureDifferences in ear shape or position
Autosomal recessive
Passed on when both parents carry the same gene change; often skips generations
Neonatal
Begins at or shortly after birth (first 4 weeks)
Treatments
No FDA-approved treatments are currently listed for Goodman syndrome.
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Specialists
View all specialists →No specialists are currently listed for Goodman syndrome.
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 Goodman syndrome.
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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.What specific features does my child have, and how severe are they?,Does my child need skull surgery, and if so, when should it happen?,Has a genetic cause been identified, and should our family have genetic testing?,What therapies should my child start, and how soon?,Are there any heart or other organ problems we need to monitor?,What signs should prompt me to seek emergency care?,Are there any specialists or centers with experience in this condition that you would recommend?
Common questions about Goodman syndrome
What is Goodman syndrome?
Goodman syndrome, also known as Acrocephalopolysyndactyly type IV (ACPS IV), is a very rare genetic condition that affects the development of the skull, hands, and feet before birth. The skull fuses too early (a condition called craniosynostosis), which can change the shape of the head and put pressure on the brain. At the same time, children with Goodman syndrome are born with extra fingers or toes (polydactyly) and fingers or toes that are fused together (syndactyly). These features together give the condition its full name, which means 'abnormal head shape with fused and extra digits.' The
How is Goodman syndrome inherited?
Goodman syndrome follows a autosomal recessive inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Goodman syndrome typically begin?
Typical onset of Goodman syndrome is neonatal. Age of onset can vary across affected individuals.