Patients living with: Dandy-Walker Syndrome

Data highlights from the Invitae Patient Insights Network

Who are we?

Who Are We?

Patients: 457 Ages: 2 to >60

Male
48% Male
Female
51% Female

Impact on our lives

iImpact On Our Lives

Frequent doctor visits

35% 2 - 6 times a year
13% One time a year

Major episodes of care

been admitted to hospital
38% been admitted to hospital
been to the ER
34% been to the ER
had surgery
29% had surgery

A combination of treatments

image description
Prescription medication 30% None 24% Over-the-counter supplements, vitamins, herbs, remedies 18%

Getting diagnosed

Getting diagnosed

Initial symptoms

Initial Symptoms
  • Other
  • Developmental delays
  • No symptoms

Average age at diagnosis

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

Extensive testing

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

Different types of tests

Different Types of Tests
21

Diagnosing specialty

  • Neurology
  • Obstetrics/Gynecology
  • Radiology

Patients everywhere are eager to help find better treatments

Better Treatments

89% want to be contacted about trials

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