Table 1

Diagnostic criteria for CHARGE syndrome

Features of CHARGE syndrome

Later childhood/adolescent issues*

Major 4C's **

Ocular coloboma
Coloboma -of iris, retina, choroid, disc; microphthalmia
Photophobia; retinal detachment Corneal abrasions
Choanal atresia/stenosis
Choanal atresia (or Cleft palate) – unilateral/bilateral, membranous/bony, stenosis/atresia
Facial growth problems, recurrent closure and resurgeries, unilateral nasal discharge
Cranial nerve anomalies
Cranial nerve dysfunction – Olfactory tract anomalies – Facial palsy (unilateral or bilateral), Sensorineural deafness, Velopharyngeal incoordination – swallowing problems
Feeding/swallowing problems; gastroesophageal reflux; hiatus hernia
Characteristic ear anomalies
Characteristic ear abnormalities – External ear (lop or cup shaped),, Middle ear (ossicular malformations, chronic serous otitis), mixed deafness, semicircular canal +/-cochlear defects
Progressive hearing loss; chronic middle ear infections; vestibular problems affecting balance and/or motor skills.

Minor

Cardiovascular malformations
Cardiovascular malformations – All types: especially conotruncal defects (e.g. Tetralogy of Fallot), AV canal defects, and aortic arch anomalies
Arrhythmias; angina; further cardiac surgeries
Genital hypoplasia
Genital hypoplasia – Males: micropenis, cryptorchidism; Females: hypoplastic labia, Both: Delayed incomplete pubertal development
Pubertal delay, hormone replacement; fertility (unsure); hypogonadotrophic hypogonadism, osteoporosis
Cleft lip/palate
Orofacial cleft – Cleft lip and/or palate
Cosmetic concerns; self-image
Tracheoesophageal fistula
Tracheoesophageal fistula – Tracheoesophageal defects of all types
Reflux esophagitis; feeding/swallowing problems
Distinctive CHARGE facies
Characteristic face – sloping forehead, flattened tip of nose
Cosmetic concerns; self-image
Growth deficiency
Growth deficiencies – Short stature Borderline growth hormone (GH) stimulation tests
Growth hormone (GH) replacement Obesity
Developmental delay
Developmental delay – Delayed motor milestones, language delay, mental retardation
Educational, behavioural, social adjustment issues; Autistic-like problems; Obsessive compulsive disorders; Attention Deficit Hyperactivity Disorder (ADHD)

Occasional***

Renal anomalies
Duplex system, Vesicoureteric reflux
Renal failure
Spinal anomalies
Scoliosis; Osteoporosis
Scoliosis
Hand anomalies
Fifth finger clinodactyly, camptodactyly and cutaneous syndactyly
Fine motor problems; cosmetic concern
Neck/shoulder anomalies
Sloping, Sprengel's deformity, kyphosis
Self-image concern

* A premature aging phenomenom may exist in the older population, however, further research studies are required.

** Absent olfactory pathways and absent/abnormal semicircular canals are cardinal radiological findings for CHARGE syndrome.

***The occasional findings are more prevalent than originally predicted [8–9]

Blake and Prasad Orphanet Journal of Rare Diseases 2006 1:34   doi:10.1186/1750-1172-1-34