Patients living with: Bilateral Frontoparietal Polymicrogyria

Data highlights from the Invitae Patient Insights Network

Who are we?

Who Are We?

Patients: 24 Ages: 2 to 19

Male
46% Male
Female
54% Female

Impact on our lives

iImpact On Our Lives

Frequent doctor visits

100% 2 - 6 times a year

Major episodes of care

been admitted to hospital
48% been admitted to hospital
been to the ER
41% been to the ER
had surgery
10% had surgery

A combination of treatments

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

Getting diagnosed

Getting diagnosed

Initial symptoms

Initial Symptoms
  • Developmental delays
  • Behavior problems
  • Changes in senses

Average age at diagnosis

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

Extensive testing

  • MRIMRI
  • Blood testsBlood tests
  • Genetic TestingGenetic Testing
  • Physical examinationPhysical examination
  • BiopsyBiopsy

Different types of tests

Different Types of Tests
7

Diagnosing specialty

  • Neurology
  • Neonatology
  • Genetics

Patients everywhere are eager to help find better treatments

Better Treatments

92% want to be contacted about trials

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