Patients living with:
17q12 deletion
Data highlights from the Invitae Patient Insights Network
Who are we?
Patients: 168 Ages: <1 to >60
Impact on our lives
Frequent doctor visits
29%
2 - 6 times a year
29%
7 - 11 times a year
Major episodes of care
45%
been admitted to hospital
A combination of treatments
None 34%
Prescription medication 28%
Over-the-counter supplements, vitamins, herbs, remedies 25%
Getting diagnosed
Initial symptoms
- Developmental delays
- Behavior problems
- Changes in mental status
Average age at diagnosis
<1
27
Youngest
AGE RANGE
Oldest
Diagnosing specialty
- Genetics
- Neurology
- Gastroenterology
Patients everywhere are eager to help find better treatments
88% want to be contacted about trials
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