CONTACT REGISTRY
PATIENT CONTACT REGISTRY:
You must be a parent or patient with a confirmed ADNP mutation or deletion to be eligible for the ADNP Contact Registry.
The ADNP Patient CONTACT REGISTRY allows diagnosed patients to stay up-to-date and informed on opportunities for research and the latest information regarding ADNP Syndrome and allowed them to be contacted by the foundation to inform them of such opportunities.
Our Contact Registry is NOT shared with external organizations ever. We will contact those with completed contact registry data as noted above, via email from the ADNP Kids Research Foundation. We may use aggregate data from the Contact Registry to publish statistics about the incidence of ADNP Syndrome. When you complete the registry, you will be shown and up to date statistics from some of the questions, which will include your data immediately.
You may also receive family meeting announcements, special mailings, and information regarding any ADNP Syndrome.
By completing this form, you 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 both US and International research opportunities . You understand that your de-identified data may be used in aggregate to compile and publish statistics about the incidence of ADNP Syndrome.
For an added level of security, our data is collected and stored on a business HIPAA compliant Survey Monkey platform.
YOU WILL NEED YOUR GENETIC REPORT TO COMPLETE THE REGISTRY AND BE ELIGIBLE TO CONTACT.
You must be a parent or patient with a confirmed ADNP mutation or deletion to be eligible for the ADNP Contact Registry.
The ADNP Patient CONTACT REGISTRY allows diagnosed patients to stay up-to-date and informed on opportunities for research and the latest information regarding ADNP Syndrome and allowed them to be contacted by the foundation to inform them of such opportunities.
Our Contact Registry is NOT shared with external organizations ever. We will contact those with completed contact registry data as noted above, via email from the ADNP Kids Research Foundation. We may use aggregate data from the Contact Registry to publish statistics about the incidence of ADNP Syndrome. When you complete the registry, you will be shown and up to date statistics from some of the questions, which will include your data immediately.
You may also receive family meeting announcements, special mailings, and information regarding any ADNP Syndrome.
By completing this form, you 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 both US and International research opportunities . You understand that your de-identified data may be used in aggregate to compile and publish statistics about the incidence of ADNP Syndrome.
For an added level of security, our data is collected and stored on a business HIPAA compliant Survey Monkey platform.
YOU WILL NEED YOUR GENETIC REPORT TO COMPLETE THE REGISTRY AND BE ELIGIBLE TO CONTACT.
- IF YOU NEED HELP NAVIGATING THE INFORMATION ON YOUR GENETIC REPORT OR HAVE ANY QUESTIONS, PLEASE EMAIL [email protected] FOR HELP.
1st ADNP Family Meeting at UCLA, California (Nov 2019) 2020 event was cancelled due to Covid)
