Who Are Our Patients?

For Background: Hatten, DD et al. Model Registry of Early Childhood Visual Impairment Collaborative Group. Model Registry of Early Childhood Visual Impairment: First Year Results. JVIB 95(7)2001, 418-433

Data that follows :From Hatten D , Boyer B presentation at AER-2005 Biennial International Conference July 15, 2004 Babies Count: The National Registry for Children with Visual Impairments, Birth to 3 years

  • 14 States, n = 1553
  • Demographics
    • Gender: Males 55%, Females: 45%
    • 79% from two parent families
    • Ethnicity: 60% European American,
      22% Hispanic/Latino, 8% African American,
      5% Asian American, 4% Other,
      1% Native American,
      1% Missing
  • Multiple disability risk at time of referral to specialized agency
    • 50% appeared to be visually impaired (VI) only
    • 3% appeared to be VI/DD
    • 47% appeared to be at high risk for VI/multiple disabilities
  • Most prevalent visual conditions
    • Cortical visual impairment 24%
    • Retinopathy of prematurity 17%
    • Optic nerve hypoplasia 9%
    • Albinism 6%
    • Structural abnormalities 5%
    • Retinal disorders 5%
    • Other 24%
    • Unknown/missing 10%
  • Most prevalent disabling conditions were
    • Syndromes associated with cognitive disabilities 19%
    • Brain trauma/damage associated with cognitive disabilities 16%
    • Cerebral palsy 15%
    • Developmental delay 14%
    • Deafness/hard of hearing 9%
  • Most prevalent health/medical conditions were
    • Orthopedic impairments 23%
    • Feeding problems 18%
    • Technology dependent 12%
    • Seizures 5%
    • Respiratory problems 5%