Informed Consent

Thank you for joining our ADNP Patient Contact Registry.  Registration with ADNP Kids Research Foundation will help to keep you up-to-date on the latest information regarding ADNP Syndrome.  

Contact Registrants will be informed about opportunities to participate in research.  Contact Registrants will also receive family meeting announcements, special emails/mailings, and information regarding discoveries about ADNP Syndrome impacting care decisions.

By completing this form, you agree that you understand that this Contact Registry is NOT shared with external organizations. You agree that you understand that your information will NOT be used for outside marketing. 

You understand that the aggregate data from the Contact Registry may be published, such as statistics about the incidence of ADNP Syndrome, including countries of birth and or residence, sex of patient, age and mutation location. Names and personal information such as address, email or phone numbers will not be shared.

By completing this form, you understand that the foundation will contact you through your email with announcements noted above.

By completing this form, you give your informed consent and agree to allow ADNP Kids Research Foundation to store information about yourself and/or your dependent with ADNP Syndrome so that you may be contacted with information about research opportunities and updates and announcements noted above. You understand that your data may be used in aggregate to compile and publish de-identified statistics about the incidence, genetic variant, gender and location of ADNP Syndrome patients

You understand that as an added level of security, this data is collected and stored on a business HIPAA compliant Survey Monkey platform.

If for any reason you wish to revoke your consent to participate in this Contact Registry, you may do so by contacting the Primary Investigator Sandra Sermone at

By completing this form, you understand that if you revoke your consent, your de-identified data published or shared will continue to be used, but name and personal information will be removed from the ADNP Contact Registry and you will not be contacted for research or the announcements noted above. Revoking you consent will have no affect on any current or previous research studies that your child or yourself have participated in.

Thank you for agreeing to participate in our ADNP Patient Contact Registry.

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* 1. FIRST Name of Individual with ADNP Syndrome
(*only list last name if it is "different" than parent/guardian filling out this form)

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


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* 3. Birth YEAR

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* 4. Gender Identification

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* 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. 
**Please do not complete the Contact Registry without this information**

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* 6. 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

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* 7. Parent Contact Information (MUST be a Parent or a Legal Guardian)

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* 8. Current Residence Country of individual with ADNP Syndrome