GLOBAL ADNP PATIENT REGISTRY
Participate in Research.
Your Data Matters!
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INTRODUCTION:
Welcome to the ADNP Kids Research Foundation (ADNP-KRF) - ADNP Patient Registry (APR). The APR is a patient driven 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, support and find treatments for ADNP syndrome. It will also allow you to see how your answers compare to others because we will be publishing summaries of our findings periodically. Our registry project will be an on-going effort and we will be adding additional surveys over time as we grow.
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. Our information can and has already made a difference.
WHY:
ADNP syndrome is a newly discovered and rare genetic disorder that affects a very small amount of individuals around the world, 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) so that your data can be included in this valuable research.
WHAT:
This is a patient 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 those affected and treating current patients, assist future clinical and drug trials, and contribute to the creation of 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 current and up and coming 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 two short and basic survey/questionnaires (Part 01 and Part2) but we will be adding additional surveys in the future as needed. Additional surveys will be addressing topics like behaviors, sleep, GI issues, seizures, developmental issues and medications among others.
PRIVACY DISCLOSURE:
NO PERSONAL IDENTIFICATION INFORMATION 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 through the registry as an added layer for the project to protect privacy.
YOUR CHILD WILL BE ASSIGNED AN IDENTIFICATION NUMBER FOR THE REGISTRY DATABASE, WHICH WILL BE HOUSED ON A SEPARATE AND PASSWORD SECURED COMPUTER. THE PATIENT IDENTIFICATION WILL NEVER BE PROCESSED ON THE REGISTRY DATABASE SYSTEM AND ALL PERSONAL INFORMATION WILL REMAIN UNDER LOCK AND KEY AND SEPARATE FROM THE REGISTRY PROJECT DATABASE.
.
You can take part in helping us advance the pace of research of ADNP. Please join today!
INTRODUCTION:
Welcome to the ADNP Kids Research Foundation (ADNP-KRF) - ADNP Patient Registry (APR). The APR is a patient driven 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, support and find treatments for ADNP syndrome. It will also allow you to see how your answers compare to others because we will be publishing summaries of our findings periodically. Our registry project will be an on-going effort and we will be adding additional surveys over time as we grow.
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. Our information can and has already made a difference.
WHY:
ADNP syndrome is a newly discovered and rare genetic disorder that affects a very small amount of individuals around the world, 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) so that your data can be included in this valuable research.
WHAT:
This is a patient 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 those affected and treating current patients, assist future clinical and drug trials, and contribute to the creation of 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 current and up and coming 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 two short and basic survey/questionnaires (Part 01 and Part2) but we will be adding additional surveys in the future as needed. Additional surveys will be addressing topics like behaviors, sleep, GI issues, seizures, developmental issues and medications among others.
PRIVACY DISCLOSURE:
NO PERSONAL IDENTIFICATION INFORMATION 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 through the registry as an added layer for the project to protect privacy.
YOUR CHILD WILL BE ASSIGNED AN IDENTIFICATION NUMBER FOR THE REGISTRY DATABASE, WHICH WILL BE HOUSED ON A SEPARATE AND PASSWORD SECURED COMPUTER. THE PATIENT IDENTIFICATION WILL NEVER BE PROCESSED ON THE REGISTRY DATABASE SYSTEM AND ALL PERSONAL INFORMATION WILL REMAIN UNDER LOCK AND KEY AND SEPARATE FROM THE REGISTRY PROJECT DATABASE.
.
You can take part in helping us advance the pace of research of ADNP. Please join today!