Patients living with: Confirmed CDG, Type Known

Data highlights from the Invitae Patient Insights Network

Who are we?

Who Are We?

Patients: 233 Ages: <1 to >60

Male
45% Male
Female
51% Female

Impact on our lives

iImpact On Our Lives

Frequent doctor visits

39% 2 - 6 times a year
19% 7 - 11 times a year

Major episodes of care

been admitted to hospital
41% been admitted to hospital
been to the ER
39% been to the ER
had surgery
21% had surgery

A combination of treatments

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Prescription medication 33% Over-the-counter supplements, vitamins, herbs, remedies 22% Special diet/nutrition 16%

Getting diagnosed

Getting diagnosed

Initial symptoms

Initial Symptoms
  • Developmental delays
  • Gastrointestinal problems
  • Other

Average age at diagnosis

Average Age at Diagnosis
5 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
20

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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