Contact Registry

Contract Registry

Registration with ADNP Kids Research Foundation will help to keep you up-to-date on the latest information regarding ADNP Syndrome.

Contract Registrants will be informed about opportunities to participate in research.

You will also receive family meeting announcements, special mailings, and information regarding any discoveries about ADNP Syndrome impacting care decisions.

Our Contact Registry is NOT shared with external organizations. We will NOT use Contact Registry for marketing. We may use aggregate data from the Contact Registry to publish statistics about the incidence of ADNP Syndrome.

By completing this form, I agree to allow ADNP Kids Research Foundation to store information about myself and/or my dependent with ADNP Syndrome so that I may be contacted with information about research opportunities and updates about US and International medical discovering impacting care decisions about ADNP Syndrome. I understand that my data may be used in aggregate to compile and publish statistics about the incidence of ADNP Kids Research Foundation

For an added level of security, our data is collected and stored on a business HIPAA compliant Survey Monkey platform.

Question Title

* 1. Individual with ADNP Syndrome Name

First Name (of individual with ADNP Syndrome)

Last Name (of individual of ADNP Syndrome)

Question Title

* 2. Date of Birth (of the individual with ADNP Syndrome)

Date

Question Title

* 3. Gender Identification

Female

Male

Other

Question Title

* 4. Place of Birth (including country) for individual with ADNP Syndrome

Question Title

* 5. Genetic Diagnosis (Please indicate the portion of the Chromosome that has a change causing ADNP Syndrome. Please consult your genetic report to give the exact location of the change. (If you need help reading the report, please contact us for support)

Nucleotide DNA Change (c.)

Protein Change (p.)

Question Title

* 6. Address

Address

City/Town

State/Province

ZIP/Postal Code

Country

Question Title

* 7. Contact Person (must be Parent or Legal Guardian)

First Name of Contact Person

Last Name of Contact Person

Relation to individual with ADNP Syndrome

Email Address of Contact Person

Phone Number of Contact Person

Question Title

* 8. Language (If English is not your native language and you would require translation, please do not fill you without the assistance of someone who can explain and assist you in answering questions.

What is your Language

Contact Registry

Question Title

* 1. Individual with ADNP Syndrome Name

Question Title

* 2. Date of Birth (of the individual with ADNP Syndrome)

Question Title

* 3. Gender Identification

Question Title

* 4. Place of Birth (including country) for individual with ADNP Syndrome

Question Title

* 5. Genetic Diagnosis (Please indicate the portion of the Chromosome that has a change causing ADNP Syndrome. Please consult your genetic report to give the exact location of the change. (If you need help reading the report, please contact us for support)

Question Title

* 6. Address

Question Title

* 7. Contact Person (must be Parent or Legal Guardian)

Question Title

* 8. Language (If English is not your native language and you would require translation, please do not fill you without the assistance of someone who can explain and assist you in answering questions.What is your Language

* 8. Language (If English is not your native language and you would require translation, please do not fill you without the assistance of someone who can explain and assist you in answering questions.

What is your Language