Rare teratologic disease

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ORPHA:52662
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15Specialists8Treatment centers

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

Teratologic dislocation of the hip (also called teratologic hip dislocation or teratologic congenital hip dislocation) is a rare condition present at birth in which one or both hip joints are severely dislocated — meaning the ball of the thigh bone sits completely outside the hip socket. Unlike the more common developmental dysplasia of the hip (DDH), this form is called 'teratologic' because it happens very early in fetal development, often as part of a broader underlying condition such as a neuromuscular disorder, a chromosomal syndrome, or another birth defect syndrome. The dislocation is typically rigid and fixed, making it much harder to treat than ordinary hip dislocation in newborns. Because the hip is dislocated so early in pregnancy, the joint and surrounding structures — including the socket, cartilage, and muscles — may be poorly formed. Children with this condition often have significant difficulty walking, uneven leg lengths, and limited movement in the hip. Pain can develop over time, especially if the condition is not treated. The underlying cause (such as arthrogryposis, myelomeningocele, or a chromosomal condition) also shapes how the child is affected overall. Treatment is complex and usually requires a team of specialists. Unlike typical infant hip dislocation, simple bracing rarely works. Surgery is often needed, though the goals and timing depend heavily on the child's overall health and underlying diagnosis. The aim of treatment is to improve function, reduce pain, and support the best possible quality of life.

Also known as:

Key symptoms:

Hip joint completely out of place at birth (dislocation present from birth)Stiff or rigid hip that cannot be moved back into place easilyUneven leg lengthsDifficulty or inability to walk normallyLimited range of motion in the hipAbnormal posture or gait (waddling walk or limping)Hip or groin pain, especially as the child grows olderMuscle weakness or tightness around the hipAssociated features of an underlying syndrome (such as joint contractures, spine problems, or muscle weakness)

Inheritance

Variable

Can be inherited in different ways depending on the underlying gene

Age of Onset

Neonatal

Begins at or shortly after birth (first 4 weeks)

Orphanet ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for Rare teratologic disease.

View clinical trials →

No actively recruiting trials found for Rare teratologic disease at this time.

New trials open frequently. Follow this disease to get notified.

Search ClinicalTrials.gov ↗Join the Rare teratologic disease community →

Specialists

15 foundView all specialists →
LP
Laurence Heidet, PHD
Specialist
PI on 1 active trial
AS
Ann (Annie) W Silk
Los Angeles, California
Specialist

Rare Disease Specialist

PI on 1 active trial
CM
Carlos R Ferreira Lopez, M.D.
Bethesda, Maryland
Specialist

Rare Disease Specialist

PI on 2 active trials
MM
Michael Recht, MD, PhD, MBA
CLEVELAND, OH
Specialist
PI on 1 active trial
AP
Anna Jansen, MD, PhD
Silver Spring, Maryland
Specialist

Rare Disease Specialist

PI on 2 active trials
TM
Tammuella Chrisentery-Singleton, MD
Phoenix, Arizona
Specialist

Rare Disease Specialist

PI on 2 active trials
BB
Barbara B Biesecker
CLARKS SUMMIT, PA
Specialist
PI on 16 active trials
DM
Diane J. Nugent, MD
MONMOUTH, ME
Specialist
PI on 1 active trial
BP
Bernard Maitre, MD, PhD
Specialist
PI on 1 active trial
MM
Mark T Dransfield, MD
NORTH SALT LAKE, UT
Specialist
PI on 1 active trial
MM
Michael N Sack, M.D.
SPEARFISH, SD
Specialist
PI on 3 active trials

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 Rare teratologic disease.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Rare teratologic disease

Disease timeline:

New recruiting trial: Automatic Phenotyping of Patients on 2D Photography

A new clinical trial is recruiting patients for Rare teratologic disease

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.What is the underlying condition causing my child's hip dislocation, and how does that affect the treatment plan?,Is surgery recommended, and if so, what type and when?,What are the realistic goals of treatment — will my child be able to walk independently?,What are the risks of surgery, and what happens if we choose not to operate?,How many surgeries might my child need over their lifetime?,What genetic testing should we have done to understand the root cause?,What therapies or home exercises can we do to support my child's hip health and overall development?

Common questions about Rare teratologic disease

What is Rare teratologic disease?

Teratologic dislocation of the hip (also called teratologic hip dislocation or teratologic congenital hip dislocation) is a rare condition present at birth in which one or both hip joints are severely dislocated — meaning the ball of the thigh bone sits completely outside the hip socket. Unlike the more common developmental dysplasia of the hip (DDH), this form is called 'teratologic' because it happens very early in fetal development, often as part of a broader underlying condition such as a neuromuscular disorder, a chromosomal syndrome, or another birth defect syndrome. The dislocation is t

At what age does Rare teratologic disease typically begin?

Typical onset of Rare teratologic disease is neonatal. Age of onset can vary across affected individuals.

Which specialists treat Rare teratologic disease?

15 specialists and care centers treating Rare teratologic disease are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.