Project 8p Needs Assessment Survey Question Title * 1. Contact Information Your Name City/Town State/Province Email Address Question Title * 2. 8p Child's Name Question Title * 3. Relationship to the 8p Child Mother Father Grandparent Legal Guardian Other (please specify) Question Title * 4. Age at 8p diagnosis 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 Question Title * 5. How long after the first symptoms or suspicion of disease did it take to get an accurate diagnosis? Less than 1 year 1 to 2 years 3 to 5 years 6 - 10 years 11+ years Question Title * 6. How many specialists did you see between the time of first manifestations or symptoms and the final diagnosis? 1 2 - 3 4 - 5 6 - 8 9+ Question Title * 7. Do you and your family incur financial costs not covered by insurance related to care for your 8p child? Yes No Question Title * 8. What is the amount your family spends annually related to care for your rare disease? Amount spent in 2018 Healthcare Services None $1 to $10,000 $10,000 - $25,000 $25,000 - $50,000 $50,000 - $100,000 More than $100,000 Healthcare Services Amount spent in 2018 menu Prescribed Medications None $1 to $10,000 $10,000 - $25,000 $25,000 - $50,000 $50,000 - $100,000 More than $100,000 Prescribed Medications Amount spent in 2018 menu Over the Counter Medications and Supplements None $1 to $10,000 $10,000 - $25,000 $25,000 - $50,000 $50,000 - $100,000 More than $100,000 Over the Counter Medications and Supplements Amount spent in 2018 menu Therapy Services (PT / OT / Speech, etc.) None $1 to $10,000 $10,000 - $25,000 $25,000 - $50,000 $50,000 - $100,000 More than $100,000 Therapy Services (PT / OT / Speech, etc.) Amount spent in 2018 menu Caregiver Support (Nanny, Respite, etc.) None $1 to $10,000 $10,000 - $25,000 $25,000 - $50,000 $50,000 - $100,000 More than $100,000 Caregiver Support (Nanny, Respite, etc.) Amount spent in 2018 menu Question Title * 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.) Question Title * 10. What symptoms do you see but may not be an official diagnosis that worries you? (eg;, starting at space, twitching, etc.) Question Title * 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. Question Title * 12. Are you a participant in the Columbia University study? Yes No Question Title * 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. Yes Done
