Overview
Growth delay due to insulin-like growth factor I resistance, also called IGF-1 resistance or primary IGF-1 deficiency due to IGF1 receptor defect, is a rare condition where the body does not respond properly to a hormone called insulin-like growth factor 1 (IGF-1). IGF-1 is one of the most important signals the body uses to grow, especially during childhood. Even when the body makes enough IGF-1, the cells cannot 'hear' the signal because the receptor — the docking station on the cell surface — does not work correctly. This leads to poor growth before and after birth. Children with this condition are often born smaller than expected and continue to grow more slowly than their peers throughout childhood. They may have a small head size, subtle facial differences, and some may have mild learning or developmental differences. Blood tests typically show normal or even high levels of IGF-1, which is an important clue that the problem is resistance rather than a lack of the hormone itself. Treatment is challenging because the usual approach of giving extra growth hormone or IGF-1 may have limited benefit when the receptor is not working well. Management is largely supportive and focused on monitoring growth, addressing developmental needs, and improving quality of life. Research into better treatments is ongoing, and care is best provided by a team of specialists.
Also known as:
Key symptoms:
Slow growth before birth, resulting in a smaller-than-normal babyContinued slow growth after birth and short stature throughout childhoodSmall head size (microcephaly)Low birth weight despite a full-term pregnancyMild intellectual disability or learning difficulties in some casesDelayed developmental milestones such as sitting, walking, or talkingSubtle facial differencesHigh levels of IGF-1 in the blood despite poor growthPoor response to growth hormone treatment
Clinical phenotype terms (16)— hover any for plain English
Autosomal dominant
Passed on from just one parent; each child has about a 50% chance of inheriting it
Neonatal
Begins at or shortly after birth (first 4 weeks)
FDA & Trial Timeline
2 eventsÇanakkale Onsekiz Mart University
Shanghai Changzheng Hospital — EARLY_PHASE1
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Growth delay due to insulin-like growth factor I resistance.
1 clinical trialare actively recruiting — trials can provide access to cutting-edge therapies.
View clinical trials →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 Growth delay due to insulin-like growth factor I resistance.
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Caregiver Resources
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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 genetic test should my child have, and how long will results take?,Is my child a candidate for IGF-1 therapy, and what results can we realistically expect?,How often should we monitor my child's growth and hormone levels?,Should other family members be tested for this condition?,What developmental or educational support should we put in place now?,Are there any clinical trials or new treatments we should know about?,What signs should prompt us to seek urgent medical attention?
Common questions about Growth delay due to insulin-like growth factor I resistance
What is Growth delay due to insulin-like growth factor I resistance?
Growth delay due to insulin-like growth factor I resistance, also called IGF-1 resistance or primary IGF-1 deficiency due to IGF1 receptor defect, is a rare condition where the body does not respond properly to a hormone called insulin-like growth factor 1 (IGF-1). IGF-1 is one of the most important signals the body uses to grow, especially during childhood. Even when the body makes enough IGF-1, the cells cannot 'hear' the signal because the receptor — the docking station on the cell surface — does not work correctly. This leads to poor growth before and after birth. Children with this condi
How is Growth delay due to insulin-like growth factor I resistance inherited?
Growth delay due to insulin-like growth factor I resistance follows a autosomal dominant inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Growth delay due to insulin-like growth factor I resistance typically begin?
Typical onset of Growth delay due to insulin-like growth factor I resistance is neonatal. Age of onset can vary across affected individuals.
Are there clinical trials for Growth delay due to insulin-like growth factor I resistance?
Yes — 1 recruiting clinical trial is currently listed for Growth delay due to insulin-like growth factor I resistance on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Growth delay due to insulin-like growth factor I resistance?
16 specialists and care centers treating Growth delay due to insulin-like growth factor I resistance are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.