ADNP Kids Research Foundation
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SHARE because you CARE

The International ADNP Patient Registry is Here! 
PLEASE ENROLL OR UPDATE YOUR REGISTRY TODAY!
As a parent or patient, your contribution to advancing ADNP syndrome research is crucial. Enrolling in the registry with a "confirmed genetic diagnosis" is the most significant way you can help accelerate progress in this field now.  Rest assured, the enrollment process is secure and straightforward.

Participating in the registry is entirely free, and it entails completing questionnaires. You can also choose to take part in our Natural History Study, which will enable us to track your child's progress over time and gain a deeper understanding of how ADNP patients age.

By sharing your information, you will aid researchers in better characterizing and comprehending the diverse conditions associated with ADNP syndrome. Ultimately, this will aid in the development of effective treatments and therapies.


​Researchers can use the registry to:
  • Analyze de-identified patient-reported data
  • Recruit patients to participate in studies
  • Collect novel data by adding new questions to the registry
  • Better understand the complexities of the syndrome
  • Better understand what is most important to families/patients

Patients can use the registry to:
  • Report specific conditions you/your child present
  • Drive progress toward treatment options and therapies
  • Gain access to future clinical studies
  • Gain access to summarized live undated information that is important to you/your child
  • ​Help identify what is important and meaningful to our community
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ADDITIONAL INFORMATION
The International ADNP Patient Registry is the world's first global patient registry for ADNP syndrome, providing easy access to de-identified patient information for the global research community. Participation from ADNP patients and parents worldwide is crucial to advancing understanding of this disorder.
Traditional small site patient registries pose a challenge for research due to limited data sets and unreliable conclusions. The ADNP Kids Research Foundation aims to overcome this obstacle by creating a comprehensive database that can be shared with scientists, researchers, and biotech companies worldwide.
With this robust database, we can expand knowledge and generate insights that support the development of effective treatments for ADNP Syndrome. Join us in our efforts to accelerate research and make a meaningful difference in the lives of those affected by this disorder.


Why Should YOU SHARE
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 make a difference now and for future generations to come! 

Why do we CARE
One word - Information!  There is an extreme lack of "shared" patient-friendly data.   We hope to unify the patient and research community with this registry following strict data sharing guidelines, and curate important information to help researchers develop outcome measures and  a Natural History Study for future therapeutics and treatment trials.



The SHARE because you CARE 
​
ADNP 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
    • Contact Registry
    • Understanding the Basics >
      • Understanding Genetics
      • Understanding Gene Therapy
      • Understanding Drug Screening
    • 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 >
      • Glimpse of Hope RDD 2020
    • 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