ADNP Kids Research Foundation
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SHARE because you CARE

The International ADNP Patient Registry is Here! 
PLEASE ENROLL TODAY
If you have a child with a confirmed diagnosis of ADNP syndrome, please consider enrolling in our International Patient Registry.  It's easy and secure!
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SHARE because you CARE

The International ADNP Patient Registry is the first-ever global patient registry created to make patient's de-identified information easily accessible for the global research community studying ADNP syndrome to help accelerate research for treatments and cures. If you are patient or a parent of a child with ADNP, no matter where in the world you live, your participation is critical at helping advance the understanding of this disorder.  

A particular concern and road block for good research is when multiple small site patient registries exist for a single rare condition, resulting in small data sets for each registry.  These types of registries are less able to draw valid conclusions for the population and the lack of information has stopped the advancement and publications outlining the true worldwide patient population.  Our organization is working to change that by creating sharable de-identified information that will make a meaningful difference for ADNP scientists, researchers, pharma and biotech companies around the world.

By creating a robust database, the ADNP Kids Research Foundation seeks to expand knowledge and generate insights and research initiatives supporting the accelerated development of targeted and effective approaches in the treatment of ADNP Syndrome.  

Why Should YOU SHARE?

Your participation gives you the opportunity to help drive research by sharing information that is important to you and will increase the understanding of the disorder.   Your information is important and CAN made a difference now and for future generations to come! 

Why Do WE CARE?
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As a grassroots non-profit organization linked to diagnosed ADNP children/patients located all over the world, we understand that it is very difficult to gather usable information.  In addition, the rarity of the disorder makes it difficult to conduct large clinical trials. To address these deficiencies, the ADNP Kids Research Foundation invites you to join the SHARE because you CARE patient registry so that your data can be included in this valuable research.  
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What is a patient-powered registry?

A Patient Registry is an organized system that collects uniform patient/parent reported data, clinical and other related medical documents and information, to evaluate specified symptoms and outcomes for a population defined by a particular disease or condition. 

What is our Registry purpose?

Our registry purpose is to build a global database which is necessary to accelerate the disease understanding, so that we may find meaningful treatments for our children and all individuals living with ADNP syndrome, and to ultimately one day help FIND A CURE. 

What are the benefits:

One word - Information!  There is an extreme lack of "shared" patient-friendly data.  We believe sharing "de-identified" group data reports back with the patient community will engage and empower the ADNP community by giving needed information to the families who deal with ADNP on a daily basis.  We hope to unify the patient and research community with this registry following strict data sharing guidelines.

The SHARE because you CARE Global Patient Registry

ENROLLMENT IS NOW OPEN
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If you have any questions, please email registry@adnpfoundation.org

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Privacy Policy  |  Terms of Services  |  Other Policies  
All rights reserved. No portion of the content of this website may be reproduced in any manner without the written permission of the author/creator.   Any information used from this website must also have credit noted to ADNP Kids Research Foundation / www.adnpfoundation.org.
Disclosure: This page represents information known to the best of our knowledge.  Given the sensitivity and fast changing pace of research and drug development, some of the information posted on our website www.adnpfoundation.org may be inaccurate or not complete, therefor this information should be confirmed by the reader. Additionally, the medical information on this website is not substitute for personal diagnosis or medical care advise. Families and patients should consult a medically qualified clinician in all matters relating to genetic diagnosis, disease management and health. Information on ADNP research is a very fast-moving field and while the information here is believed to be the best available at the time of publication, some facts may later be updated or change. Please see additional disclosures on our PRIVACY POLICY page.
  • About
    • What is ADNP
    • Our Story
    • Our Mission
    • Our Team
    • Medical and Scientific Advisory Board
    • 501(c)(3) Determination
    • Inclusivity Statement
  • RESEARCH
    • Research Projects
    • Research Strategy
    • Ketamine Trial
    • Ketamine Trial Publication
    • Ketamine Update
    • Path to a cure
    • NET STUDY
    • publications
  • Families
    • Newly Diagnosed
    • ADNP Patient Registry
    • Contact Registry
    • Understanding the Basics
    • Worldwide Parent Ambassadors
    • contact us
    • ADNP Family Conference >
      • HIGHLIGHTS- ADNP Syndrome Family Conference
      • TSA Travel Help
      • #CureADNP
  • NEWS
    • NET Collaboration Study
    • Ketamine Trial Phase 2 Announcement
    • Mount Sinai Launches First Drug Trial for ADNP Syndrome
    • Seaver Midtown Partnership
    • Biomarker Discovered
    • NEWS - p.Tyr719* Case Study
    • NEWS HIGHLIGHTS- ADNP Syndrome Family Conference
  • ADNP STORE
  • DONATE/SUPPORT
    • Warrior Fun Run 2022 >
      • Past Fun Run Pictures
      • Sponsorship Opportunity
    • Boston Marathon
    • Third Party Fundraising
  • About Us new