Patients living with: Dandy-Walker Syndrome

Data highlights from the Invitae Patient Insights Network

Who are we?

Who Are We?

Patients: 355 Ages: <1 to >60

Male
48% Male
Female
51% Female

Impact on our lives

iImpact On Our Lives

Frequent doctor visits

39% 2 - 6 times a year
15% Do not see a doctor or healthcare provider for this condition

Major episodes of care

been admitted to hospital
37% been admitted to hospital
been to the ER
34% been to the ER
had surgery
29% had surgery

A combination of treatments

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Prescription medication 28% None 26% Over-the-counter supplements, vitamins, herbs, remedies 21%

Getting diagnosed

Getting diagnosed

Initial symptoms

Initial Symptoms
  • Other
  • Developmental delays
  • Growth delay

Average age at diagnosis

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

Extensive testing

  • MRIMRI
  • CT scanCT scan
  • UltrasoundUltrasound
  • EEG (electroencephalogram, examines brain waves)EEG (electroencephalogram, examines brain waves)
  • Physical examinationPhysical examination

Different types of tests

Different Types of Tests
18

Diagnosing specialty

  • Neurology
  • Obstetrics/Gynecology
  • Radiology

Patients everywhere are eager to help find better treatments

Better Treatments

88% want to be contacted about trials

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