GLOBAL ADNP PATIENT REGISTRY

Participate in Research.
​Your Data Matters!

​INTRODUCTION:
Welcome to the ADNP Kids Research Foundation (ADNP-KRF) - ADNP Patient Registry (APR)! The APR is a parent driven patient registry.  Your on-going participation in the APR gives you the opportunity to share valuable information that will help our organization and collaborating researchers better understand and treat ADNP syndrome.  It will also allow you see how your answers compare to others because we will be publishing summaries of our findings.  Our registry project will be an on-going effort and we will be adding additional surveys over time.

Please consider participating because we don't know what is possible or what help we can find unless we as parents try, and collectively we as parents are the best resource of information about our children with ADNP syndrome.
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WHY:
ADNP syndrome is a newly discovered and rare genetic disorder, which makes it difficult to gather information and develop treatments. In addition, the rarity of the disorder makes it difficult to conduct large clinical trials. To address these deficiencies, the ADNP-KRF invites you to join the ADNP Patient Registry (APR).

WHAT:
​This is a parent driven registry project.  The goal of the registry is to collect information on patients diagnosed with ADNP syndrome (ADNP) in order to collaborate with researchers around the world to increase and accelerate the incredibly slow pace of research, inform and assist future clinical and drug trials, and create a Natural History Study for ADNP.  

As a grassroots non-profit organization, we hope that our patient registry will provide a forum for ADNP families from all over the world to share their information and provide data that will help lead to a better understanding of ADNP.

As registry participants, you may elect to receive information about opportunities to participate in research, clinical trials, drug trials and other news from us as well as other supported studies.
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The registry will be on-going.  We are starting with one short and basic survey/questionnaire (Part 01) but will be adding additional surveys in the coming months.  Additional surveys will be addressing topics like behaviors, sleep, GI issues, seizures, developmental issues and medications among others.

PRIVACY:

NO PERSONAL IDENTIFICATION WILL EVER BE SHARED WITH ANYONE WITHOUT YOUR PRIOR WRITTEN CONSENT! 

YOU DO NOT NEED TO SEND US ANY MEDICAL RECORDS.  This is a questionnaire type project and we want no digital transmission of medical records of any kind transferred for the project to protect privacy.  

​WE WILL SEND YOU AN IDENTIFICATION NUMBER TO USE WHEN YOU SIGN UP TO THE REGISTRY AND FROM THAT POINT ON, YOUR INFORMATION WILL ONLY BE IDENTIFIED IN OUR REGISTRY BY YOUR IDENTIFICATION NUMBER AND YOUR NAME WILL REMAIN UNDER LOCK AND KEY AND SEPARATE FROM THE REGISTRY PROJECT DATABASE.
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You can take part in helping us advance the pace of research of ADNP.  Please join today!

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