Amniotic band syndrome

Last reviewed

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ORPHA:295000OMIM:217100Q79.8
Who is this for?
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2Active trials20Specialists8Treatment centers1Financial resources

Where are you in your journey?

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

Amniotic band syndrome (ABS), also known as amniotic band sequence, constriction band syndrome, or Streeter dysplasia, is a condition that occurs before birth when thin, string-like strands of the amniotic sac (the inner lining of the fluid-filled bag surrounding the baby) become wrapped around parts of the developing baby. These fibrous bands can restrict blood flow and interfere with normal growth, leading to a wide range of birth defects. The severity varies greatly from person to person — some babies have only mild indentations or creases on their fingers or toes, while others may experience more serious problems such as missing fingers or toes, clubfoot, cleft lip or palate, or even limb amputations that happen before birth. The condition is not inherited and typically occurs randomly. It is believed to happen when the inner membrane of the amniotic sac ruptures early in pregnancy, releasing sticky strands that can entangle the baby's developing body parts. The earlier in pregnancy this occurs, the more severe the effects tend to be. Treatment depends on the type and severity of the abnormalities. Many children benefit from surgery after birth to release constriction bands, reconstruct affected limbs, or correct other structural problems. Prosthetics and physical therapy may also be needed. In rare and severe cases, fetal surgery during pregnancy has been performed to release bands that threaten a limb. With appropriate medical care, most children with amniotic band syndrome go on to live full and active lives.

Also known as:

Key symptoms:

Ring-like constriction bands around fingers, toes, arms, or legsSwelling of a limb below a constriction bandMissing fingers or toes (amputation before birth)Fingers or toes fused together (syndactyly)ClubfootCleft lip or cleft palateUneven limb lengthAbnormal indentations or creases on the skinShortened or underdeveloped limbsAbnormal head or face shape in severe casesAbdominal wall defects in severe casesRestricted movement in affected limbs

Clinical phenotype terms (28)— hover any for plain English
Congenital contractureHP:0002803Amniotic constriction rings of armsHP:0010483Edema of the upper limbsHP:0010742Craniofacial cleftHP:5201015Amniotic constriction ringHP:0009775Digital constriction ringHP:0010491Amniotic constriction rings of legsHP:0010495Abnormal hair whorlHP:0010721
Inheritance

Sporadic

Usually appears on its own, not inherited from a parent

Age of Onset

Neonatal

Begins at or shortly after birth (first 4 weeks)

Orphanet ↗OMIM ↗NORD ↗

FDA & Trial Timeline

4 events
Nov 2025This is a Multicentre International Study Evaluating CT-based IGABT With / Without Either TRUS During BT/Pre BT MR as Per IBS-GECESTRO-ABS Recommendations for Target contouring-as an Alternative to MRIGABT for Cervical Cancer From Implementation Perspectives Under EMBRACE-III:TRIPLET IMPACT Study.

Homi Bhabha Cancer Hospital & Research Centre

TrialNOT YET RECRUITING
Sep 2025Baby ABS (Abdominal Binder Study)

University of Minnesota — NA

TrialRECRUITING
Jan 2024Level Up! Adaptive Gaming for Children With Upper Limb Differences

University of Manitoba — NA

TrialRECRUITING
Jan 2020The Influence of 3D Printed Prostheses on Neural Activation Patterns

University of Nebraska — NA

TrialRECRUITING

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

Treatments

No FDA-approved treatments are currently listed for Amniotic band syndrome.

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

View clinical trials →

Clinical Trials

2 recruitingView all trials with filters →
N/A2 trials
The Influence of 3D Printed Prostheses on Neural Activation Patterns
N/A
Actively Recruiting
PI: Jorge M Zuniga, PhD (University of Nebraska) · Sites: Omaha, Nebraska · Age: 318 yrs
Level Up! Adaptive Gaming for Children With Upper Limb Differences
N/A
Actively Recruiting
PI: Meghan C Guglich, C.P.(c), MSc. (Rehabilitation Centre for Children) · Sites: Winnipeg, Manitoba · Age: 717 yrs

Specialists

20 foundView all specialists →
MM
Meghan C Guglich, C.P.(c), MSc.
Specialist
PI on 1 active trial2 Amniotic band syndrome publications
JP
Jorge M Zuniga, PhD
Specialist
PI on 2 active trials
LA
Livia Mihaela Apostol
Specialist
1 Amniotic band syndrome publication
CG
Corina Gică
Specialist
1 Amniotic band syndrome publication
IH
Iulia Huluță
Specialist
1 Amniotic band syndrome publication
AV
Ana Maria Vayna
Specialist
1 Amniotic band syndrome publication
AP
Anca Maria Panaitescu
Specialist
1 Amniotic band syndrome publication
NG
Nicoleta Gana
Specialist
1 Amniotic band syndrome publication
AL
A Lamrissi
Specialist
1 Amniotic band syndrome publication
MM
M Mourabbih
Specialist
1 Amniotic band syndrome publication
OO
O Ouajih
Specialist
1 Amniotic band syndrome publication
MJ
M Jalal
PLANO, TX
Specialist
1 Amniotic band syndrome publication
KF
K Fichtali
Specialist
1 Amniotic band syndrome publication
SB
S Bouhya
Specialist
1 Amniotic band syndrome publication
PJ
Pierce L Janssen
LIVINGSTON, NJ
Specialist
1 Amniotic band syndrome publication
DI
Dani C Inglesby
NEW YORK, NY
Specialist
1 Amniotic band syndrome publication
NG
Nicolae Gică
Specialist
1 Amniotic band syndrome publication
AM
Abhiram Prasad, MD
ROCHESTER, MN
Specialist
PI on 2 active trials1 Amniotic band syndrome publication
SM
Sung-Yun Pai, M.D.
Bethesda, Maryland
Specialist

Rare Disease Specialist

PI on 2 active trials
DM
Dr Umesh Mahantshetty
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

Financial Resources

1 resources

SUPREP Bowel Prep Kit

Braintree Laboratories, Inc.

SUPREP Bowel Prep Kit — Contact Braintree Laboratories, Inc.

Unverified — confirm before calling
Patient Assistance
Manufacturer Program
Accepting applications

Travel Grants

No travel grants are currently matched to Amniotic band syndrome.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Amniotic band syndrome

Disease timeline:

New recruiting trial: A Study of Selinexor Monotherapy in Subjects With JAK Inhibitor-naïve Myelofibrosis and Moderate Thrombocytopenia

A new clinical trial is recruiting patients for Amniotic band syndrome

New recruiting trial: Study of Individuals and Families With Aberrations in DDX41 or Similar Cancer Predisposition Variants

A new clinical trial is recruiting patients for Amniotic band syndrome

New recruiting trial: Baby ABS (Abdominal Binder Study)

A new clinical trial is recruiting patients for Amniotic band syndrome

New recruiting trial: Level Up! Adaptive Gaming for Children With Upper Limb Differences

A new clinical trial is recruiting patients for Amniotic band syndrome

New recruiting trial: The Influence of 3D Printed Prostheses on Neural Activation Patterns

A new clinical trial is recruiting patients for Amniotic band syndrome

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.How severe is my child's amniotic band syndrome, and which body parts are affected?,Will my child need surgery, and if so, when is the best time to do it?,What kind of therapy (physical, occupational) will my child need?,Are there any risks of blood flow problems in the affected limbs that we should watch for?,Will my child need prosthetics or adaptive devices?,Is there any chance this could happen again in a future pregnancy?,Can you refer us to a support group or family network for amniotic band syndrome?

Common questions about Amniotic band syndrome

What is Amniotic band syndrome?

Amniotic band syndrome (ABS), also known as amniotic band sequence, constriction band syndrome, or Streeter dysplasia, is a condition that occurs before birth when thin, string-like strands of the amniotic sac (the inner lining of the fluid-filled bag surrounding the baby) become wrapped around parts of the developing baby. These fibrous bands can restrict blood flow and interfere with normal growth, leading to a wide range of birth defects. The severity varies greatly from person to person — some babies have only mild indentations or creases on their fingers or toes, while others may experien

How is Amniotic band syndrome inherited?

Amniotic band syndrome follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Amniotic band syndrome typically begin?

Typical onset of Amniotic band syndrome is neonatal. Age of onset can vary across affected individuals.

Are there clinical trials for Amniotic band syndrome?

Yes — 2 recruiting clinical trials are currently listed for Amniotic band syndrome on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.

Which specialists treat Amniotic band syndrome?

20 specialists and care centers treating Amniotic band syndrome are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.

What treatment and support options exist for Amniotic band syndrome?

1 patient support program are currently tracked on UniteRare for Amniotic band syndrome. See the treatments and support programs sections for copay assistance, eligibility, and contact details.