Patients living with: Confirmed CDG, Type Known

Data highlights from the Invitae Patient Insights Network

Who are we?

Who Are We?

Patients: 284 Ages: <1 to >60

Male
43% Male
Female
50% Female

Impact on our lives

iImpact On Our Lives

Frequent doctor visits

36% 2 - 6 times a year
21% 1 - 3 times per month

Major episodes of care

been admitted to hospital
41% been admitted to hospital
been to the ER
39% been to the ER
had surgery
20% had surgery

A combination of treatments

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Prescription medication 31% Over-the-counter supplements, vitamins, herbs, remedies 21% Special diet/nutrition 19%

Getting diagnosed

Getting diagnosed

Initial symptoms

Initial Symptoms
  • Developmental delays
  • Other
  • Gastrointestinal problems

Average age at diagnosis

Average Age at Diagnosis
6 Year(s) old
<1 >60
Youngest AGE RANGE Oldest

Extensive testing

  • Genetic TestingGenetic Testing
  • Blood testsBlood tests
  • MRIMRI
  • EEG (electroencephalogram, examines brain waves)EEG (electroencephalogram, examines brain waves)
  • Physical examinationPhysical examination

Different types of tests

Different Types of Tests
21

Diagnosing specialty

  • Genetics
  • Neurology
  • Metabolism

Patients everywhere are eager to help find better treatments

Better Treatments

91% want to be contacted about trials

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