Patients living with: Confirmed CDG, Type Not Tested

Data highlights from the Invitae Patient Insights Network

Who are we?

Who Are We?

Patients: 10 Ages: 2 to 47

Male
50% Male
Female
40% Female

Impact on our lives

iImpact On Our Lives

Frequent doctor visits

33% 1 or more times per week
33% 2 - 6 times a year

Major episodes of care

been to the ER
67% been to the ER
been admitted to hospital
33% been admitted to hospital

A combination of treatments

image description
Special diet/nutrition 40% None 20% Over-the-counter supplements, vitamins, herbs, remedies 20%

Getting diagnosed

Getting diagnosed

Initial symptoms

Initial Symptoms
  • Abnormal laboratory findings
  • Behavior problems
  • Developmental delays

Average age at diagnosis

Average Age at Diagnosis
4 Year(s) old
1 6
Youngest AGE RANGE Oldest

Extensive testing

  • Blood testsBlood tests
  • EEG (electroencephalogram, examines brain waves)EEG (electroencephalogram, examines brain waves)
  • MRIMRI

Different types of tests

Different Types of Tests
3

Diagnosing specialty

  • Did not see a doctor or healthcare provider for this condition
  • Neurology

Patients everywhere are eager to help find better treatments

Better Treatments

90% want to be contacted about trials

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