*1.Contact Information(Required.)

Your Name

City/Town

State/Province

Email Address

*2.8p Child's Name(Required.)

*3.Relationship to the 8p Child(Required.)

Mother

Father

Grandparent

Legal Guardian 

Other (please specify)

*4.Age at 8p diagnosis(Required.)

0 - 6 months old

6 - 12 months old

1 - 2 years old

3 - 5 years old

6 - 10 years old

11 - 15 years old

16+ years old

*5.How long after the first symptoms or suspicion of disease did it take to get an accurate diagnosis?(Required.)

Less than 1 year

1 to 2 years

3 to 5 years

6 - 10 years

11+ years

*6.How many specialists did you see between the time of first manifestations or symptoms and the final diagnosis?(Required.)

1

2 - 3

4 - 5

6 - 8

9+

*7.Do you and your family incur financial costs not covered by insurance related to care for your 8p child?(Required.)

Yes

No

*8.What is the amount your family spends annually related to care for your rare disease?(Required.)

Amount spent in 2018

Healthcare Services

None$1 to $10,000$10,000 - $25,000$25,000 - $50,000$50,000 - $100,000More than $100,000

Prescribed Medications

None$1 to $10,000$10,000 - $25,000$25,000 - $50,000$50,000 - $100,000More than $100,000

Over the Counter Medications and Supplements

None$1 to $10,000$10,000 - $25,000$25,000 - $50,000$50,000 - $100,000More than $100,000

Therapy Services (PT / OT / Speech, etc.)

None$1 to $10,000$10,000 - $25,000$25,000 - $50,000$50,000 - $100,000More than $100,000

Caregiver Support (Nanny, Respite, etc.)

None$1 to $10,000$10,000 - $25,000$25,000 - $50,000$50,000 - $100,000More than $100,000

*9.What tools or resources have you found useful in caring for your 8p child?
(Education Typical or Special, Therapy, Supplements, Treatments, CBD Oil, etc.)
(Required.)

*10.What symptoms do you see but may not be an official diagnosis that worries you? (eg;, starting at space, twitching, etc.)(Required.)

*11.What is your biggest worry or concern with this disorder today and in the future?  Ex: Health declines. Life skills regression. Life expectancy compromised due to the condition. (Required.)

*12.Are you a participant in the Columbia University study?(Required.)

Yes

No

*13.I understand that by filling out this form, I agree to allow Project 8p to share my responses with other parties working in partnership with Project 8p. All information shared will be de-identified and anonymous.(Required.)

Yes