ADNP Kids Research Foundation
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NET STUDY

Patient Research Project Coming Soon
 
A New Assessment Measure Research Study to Measure Skills in ADNP Patients
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The ADNP Kids Research Foundation has provided a grant for ADNP to take part in the multi syndrome NET Study, which includes 4 other similar rare genetic conditions. 

The research study aims to address the lack of  evaluation tools specifically catered to collecting information from patients with neurodevelopmental genetic syndromes such as ADNP Syndrome. If comprehensive assessments could successfully be done "remotely", this could increase the frequency and quality of rich information about how people with ADNP syndrome and other neurodevelopmental conditions function. This information can be used by future researchers to better understand different patterns of development and by clinicians to make it easier on their patients to provide information without having to travel to specialty care clinics. The new tool, designed with clinician, patient and caregiver involvement, will be more accurate, repeatable and sensitive to change than what is currently available.

Participant Criteria:
  • ADNP patients in the US or abroad
  • A diagnosis of ADNP Syndrome
  • Age 3-45
  • A participating parent
  • Access to a reliable internet connection
  • Parent and child (if child is verbal) must be fluent in English for this phase
  • Non-verbal children can participate

Compensation:
  • Up to $180 US in Amazon gift cards will be awarded for participation in this research.

If you would like to learn more about this research opportunity,
please click here to join our
"CONTACT REGISTRY".  

You will be emailed information about the upcoming Q&A regarding the project and participation.

If you would like to participate in the NET Study, please contact admin@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