ADNP PATIENT REGISTRY
Participate in Research - Your Data Matters!
Welcome to the ADNP Kids Research Foundation - ADNP Patient Registry! Your on-going participation in the ADNP Patient Registry 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 let 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. So again, please share your data because we don't know what is possible unless we try, and collectively we as parents are the best resourse of information about our children with ADNP syndrome.
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.
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.
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.
You can take part in helping us advance the pace of research of ADNP. Please join today!