Osteogenesis Imperfecta

Resident Dr. Melisa DEMIR· University of Health Sciences, Baltalimani Training and Research Hospital, Istanbul
Apr 23, 2026

OVERWIEV

●      Osteogenesis Imperfecta (OI) is connective tissue disease

●      Decreased mechanical resistance of bone due to defects in collagen metabolism

●      Recurrent fractures and progressive skeletal deformities

●      Reduction in the amount of normal COL1A1 or COL1A2 genes or its replacement with a poorly functioning mutant collagen

●      Other clinical features, may include blue or gray sclerae, dentinogenesis imperfecta, progressive hearing loss, easy bruising, unstable and lax joints, and muscular weakness

ETIOLOGY

90%  result from autosomal dominant mutations in

●      COL1A1 (on chromosome 17)

●      COL1A2 (on chromosome 7)

which encode the α1 and α2 chains of type 1 procollagen, causes abnormal collagen cross-linking via a glycine substitution in the procollagen molecule

Quantitative Defects (Haploinsufficiency):

●      Seen in Type 1 OI

●      The collagen produced is structurally normal, but the amount is insufficient

●       Milder phenotype.

Qualitative Defects (Structural Abnormalities):

●      Seen in Types II, III, and IV OI

●      Point mutations result in the production of structurally abnormal collagen

●      Impaired triple-helix formation and more severe clinical phenotypes

Autosomal Dominant (Classic): Most common. Associated with COL1A1/COL1A2 mutations.

Autosomal Recessive: Identified in more severe or lethal phenotypes. These mutations often affect genes responsible for:

●      Post-translational modification (e.g., CRAP, LEPRE1, PPIB).

●      Chaperone functions and folding (e.g., SERPINH1, FKBP10).

●      Osteoblast differentiation and signaling (e.g., SP7, WNT1).

●      Bone mineralization (e.g., IFITM5 - Note: This is an autosomal dominant form leading to hypertrophic callus).

  

CLASSIFICATION

●      Clinical gold standard Sillence Classification

●      originally 4 types

      Later on added Cole modifications (type V , VI , VII)

      These 3 types of OI have no Type I collagen mutation but have abnormal bone on microscopy and a similar phenotype

  

TYPE

INHERITANCE

SCLAREA

KEY CLİNİCAL FEATURES

Type I

Autosomal Dominant

Blue

Mildest form; presents at preschool age (tarda). 50% have hearing deficit. Subdivided into A and B based on dentinogenesis imperfecta (tooth involvement).

Type II

Autosomal Recessive

Blue

Lethal in the perinatal period.

Type III

Autosomal Recessive

Normal

Most severe survivable form. Fractures present at birth; progressively short stature and severe limb deformities.

Type IV

Autosomal Dominant

Normal

Moderate severity. Common findings include bowing of long bones and vertebral fractures. Hearing is usually normal. Subdivided (A/B) by tooth involvement.

Type V

-

-

Characterized by hypertrophic callus formation after fractures and ossification of the interosseous membranes (IOM) in the forearm and leg.

Type VI

-

-

Moderate severity, clinically similar to Type IV.

Type VII

-

-

Associated with rhizomelia (shortening of proximal limb segments) and coxa vara.

 

●      Shapiro modification of the Looser classification

●      Stronger prognostic indicator

      OI Congenita

■      most severe form

■      fractures occur in utero or at birth

      OI Tarda

■      fractures begin after the neonatal period

Class

Fracture Timing

Radiological Findings

Congenita A

Fractures present at birth

Bone is radiologically abnormal

Congenita B

Fractures present at birth

Bone is radiologically normal

Tarda A

First fracture occurs before or at walking stage

Bones are narrow and osteopenic

Tarda B

First fracture occurs after walking

Bone is radiologically normal

  

CLINICAL PRESENTATION

Skeletal Manifestations:

●      Recurrent fractures from minimal or no trauma

      Fractures often involve the long bones (femur and humerus)

      Can occur in utero, during birth, or during daily activities

      Frequency typically decreases after puberty

●      Progressive Deformities, Recurrent fractures and the "wax-like" quality of the bone lead to:

      Lower Extremity: Anterolateral bowing of the femur and anterior bowing of the tibia saber ‘shin’

      Upper Extremity: Radial head dislocation and bowing of the forearm.

      Spine: Scoliosis and kyphosis (common in Types III and IV), and vertebral compression fractures (codfish vertebrae).

●      Growth retardation is a hallmark of severe forms (Type III). Proportional or disproportional short stature is common.

●      Craniofacial: Macrocephaly, triangular facies, and frontal bossing.

Extra-Skeletal Manifestations (Systemic Findings):

●      Blue Sclerae

●      Dentinogenesis Imperfecta (DI)

●      Hearing Loss

●      Ligamentous Laxity

●      Easy bruising and thin, translucent skin due to capillary fragility and abnormal dermal collagen.

●      Basilar Invagination

      In severe cases (Type III/IV),

      the skull base can settle onto the cervical spine, potentially causing brainstem compression.

      presents with apnea, altered consciousness, ataxia, or myelopathy

●      Aortic or mitral valve regurgitation may develop in adulthood

 

 

●       Radiological Evaluation

 

●      Long bones of the limbs short and wide with thin cortices

●      Diaphyses as wide as the metaphyses

●      Numerous fractures in various stages of healing

●      Popcorn calcifications

      Seen primarily in Type III

      Scalloped, radiolucent areas with sclerotic margins at the ends of long bones (growth plates), representing disordered mineralization

●      Codfish Vertebrae

      Biconcave vertebral bodies caused by the pressure of the intervertebral discs on the weakened bone

●      Wormian Bones

      The presence of more than 10 Wormian bones is highly suggestive of OI

●      Shepherd’s Crook Deformity

      Severe varus deformity of the proximal femur, common in Types III and IV, which significantly impairs ambulation

●      Protrusio Acetabuli

●      Zebra stripe sign

      cyclic bisphosphonate treatment

 Laboratory and Genetic Evaluation

●      No single commercially available diagnostic test

●      Alkaline phosphatase levels may be mildly elevated

 

DIFFERENTIAL DIAGNOSES

●      Congenital hypophosphatasia

●      Achondroplasia

●      Pyknodysostosis

●      Diffuse osteopenia in the early stages of leukemia

●      Idiopathic juvenile osteoporosis

●      Child abuse or battered child syndrome

 

 

TREATMENT/MANAGEMENT

1. General Approach

●      Mild Disease

      Primarily focused on fracture management

       avoid contact sports.

●      Moderate to Severe

      Requires comprehensive rehabilitation

      orthopedic intervention for fractures and scoliosis

●      Severe Disease

      Often necessitates intramedullary rodding

     osteotomies to correct long-bone bowing

2. Medical Therapy

●      Bisphosphonates

      Intravenous pamidronate / oral alendronate

      reduce bone resorption, increase bone mineral density , and improve ambulatory status

      maintain bisphosphonate-free period around the time of IM rodding

■      interferes with osteotomy healing >> fracture healing

●      Investigational Treatments

      Gene therapy, cell transplantation, and monoclonal antibodies (e.g., romosozumab or TGFβ inhibitors)

      not yet in routine clinical use.

3. Orthopedic Management

The primary goal is to optimize function and prevent/correct deformity.

●      Surgical Techniques

      Sofield–Millar procedure (multiple osteotomies with internal fixation).

●      Intramedullary Rodding: Prophylactic rodding is recommended for recurrent long-bone fractures

      Telescoping Rods: (e.g., Fassier–Duval) Grow with the child to provide continuous support.

      Non-telescoping Rods: (e.g., Rush nails, Williams rods) Fixed-length options used depending on bone size.

●      Spine Care: Continuous monitoring for scoliosis, kyphosis, and basilar invagination

 

 

PROGNOSIS

The prognosis for Osteogenesis Imperfecta is highly variable and depends on several key clinical indicators:

●      Classification Systems

      The Shapiro classification

●      Ambulatory Predictors

      The age at which the first long bone fracture occurs

●      Survival Factors

      severity and location of fractures

●      Developmental Milestones

      independent sitting or standing by age 12 is a strong indicator of ultimate walking ability

●      Early Milestones

      independent sitting or standing by 12 months of age are highly likely to successfully ambulate later in life

 

REFERENCES

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2.     Engelbert RH, Uiterwaal CS, Gulmans VA, Pruijs H, Helders PJ. Osteogenesis imperfecta in childhood: prognosis for walking. J Pediatr. 2000 Sep;137(3):397-402. [PubMed]

3.     Sillence D. Osteogenesis imperfecta: an expanding panorama of variants. Clin Orthop Relat Res. 1981 Sep;(159):11-25. [PubMed]

4.     Shapiro F. Consequences of an osteogenesis imperfecta diagnosis for survival and ambulation. J Pediatr Orthop. 1985 Jul-Aug;5(4):456-62. [PubMed]

5.     Harrington J et al: Update on the evaluation and treatment of osteogenesis imperfecta. Pediatr Clin North Am. 61(6):1243-57, 2014

6.     Marini JC: Osteogenesis imperfecta. In: Kliegman RM et al, eds: Nelson Textbook of Pediatrics. 20th ed. Saunders; 2016:3380-4.

7.     Campbell's Operative Orthopaedics, 4-Volume Set, 15th Edition

8.     Tachdjian's Pediatric Orthopaedics: From the Texas Scottish Rite Hospital for Children, 6th edition

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