Patients living with: Coats disease

Data highlights from the Invitae Patient Insights Network

Who are we?

Who Are We?

Patients: 282 Ages: 2 to >60

77% Male
22% Female

Impact on our lives

iImpact On Our Lives

Frequent doctor visits

30% 2 - 6 times a year
23% One time a year

Major episodes of care

had surgery
59% had surgery
been admitted to hospital
27% been admitted to hospital
been to the ER
14% been to the ER

A combination of treatments

image description
None 49% Medical therapy 19% Prescription medication 14%

Getting diagnosed

Getting diagnosed

Initial symptoms

Initial Symptoms
  • Changes in senses
  • Other
  • No symptoms

Average age at diagnosis

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

Extensive testing

  • OtherOther
  • Physical examinationPhysical examination
  • CT scanCT scan
  • UnsureUnsure
  • UltrasoundUltrasound

Different types of tests

Different Types of Tests

Diagnosing specialty

  • Ophthalmology
  • General Practitioner/General Internal Medicine
  • Other type of doctor or healthcare provider

Patients everywhere are eager to help find better treatments

Better Treatments

94% want to be contacted about trials

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