The SHARE because you CARE
ADNP Patient Registry Project
Participate in Research. Your Data Matters!
The SHARE because you CARE - ADNP Patient Registry Project is an multi-level international repository of patient reported data and a mulit-level patient reported clinical information registry project on individuals and families with ADNP Syndrome developed as a tool for education and collaboration with world-leading research teams.
The registry will take place in multiple layers. To begin, the patient contact and general symptom log will be sent out, an IRB approved registry questionnaire for natural history study data collection and supplemental questionnaires regarding clinical trial and clinical studies as needed. Over time, additional natural history study questionnaires will also be collected to identify the progression of the disease.
The ADNP Kids Research Foundation is dedicated to supporting research for education and treatment of ADNP syndrome and to improve the lives of those living with the disease. By creating a robust database and collaborating with world-leading scientific research experts, the ADNP Kids Research Foundation seeks to support an era of precision medicine that will dramatically improve the discovery of therapeutic treatments for ADNP Syndrome and make a meaningful difference in the lives of people with this severe and debilitating neurological genetic disorder.
By building the world’s most robust database of its kind, research teams from around the world will be able to expand their knowledge base and generate fresh insights and research initiatives supporting the development of more targeted and effective approaches in the treatment of ADNP Syndrome, including the FDA clinical trial for CP201/NAP. This data will ultimately assist the ADNP community in generating better patient care and quality of life for children and adults suffering with ADNP Syndrome.
Through our website we seek to educate patients and family members about the scientific findings from the registry and about advances in the diagnosis, treatment and management of ADNP Syndrome. This will allow participants to see ongoing published summaries of our findings as we build our database. It will produce valuable information for those affected and those treating current patients, it will assist future clinical and drug trials and contribute to the creation of a Natural History Study for ADNP.
WHY SHOULD YOU SHARE?
The SHARE because you CARE - ADNP Patient Registry Project is a patient driven multi-level registry. Your participation gives you the opportunity to help drive research by sharing information that will increase the understanding of the disorder, support and find treatments for ADNP syndrome. Your information is important and CAN made a difference!
As a grassroots non-profit organization with diagnosed ADNP children 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 The SHARE because you CARE - ADNP Patient Registry Project so that your data can be included in this valuable research.
YOU CAN TAKE PART IN HELPING US ADVANCE THE UNDERSTANDING OF ADNP SYNDROME.
The registry will take place in multiple layers. To begin, the patient contact and general symptom log will be sent out, an IRB approved registry questionnaire for natural history study data collection and supplemental questionnaires regarding clinical trial and clinical studies as needed. Over time, additional natural history study questionnaires will also be collected to identify the progression of the disease.
The ADNP Kids Research Foundation is dedicated to supporting research for education and treatment of ADNP syndrome and to improve the lives of those living with the disease. By creating a robust database and collaborating with world-leading scientific research experts, the ADNP Kids Research Foundation seeks to support an era of precision medicine that will dramatically improve the discovery of therapeutic treatments for ADNP Syndrome and make a meaningful difference in the lives of people with this severe and debilitating neurological genetic disorder.
By building the world’s most robust database of its kind, research teams from around the world will be able to expand their knowledge base and generate fresh insights and research initiatives supporting the development of more targeted and effective approaches in the treatment of ADNP Syndrome, including the FDA clinical trial for CP201/NAP. This data will ultimately assist the ADNP community in generating better patient care and quality of life for children and adults suffering with ADNP Syndrome.
Through our website we seek to educate patients and family members about the scientific findings from the registry and about advances in the diagnosis, treatment and management of ADNP Syndrome. This will allow participants to see ongoing published summaries of our findings as we build our database. It will produce valuable information for those affected and those treating current patients, it will assist future clinical and drug trials and contribute to the creation of a Natural History Study for ADNP.
WHY SHOULD YOU SHARE?
The SHARE because you CARE - ADNP Patient Registry Project is a patient driven multi-level registry. Your participation gives you the opportunity to help drive research by sharing information that will increase the understanding of the disorder, support and find treatments for ADNP syndrome. Your information is important and CAN made a difference!
As a grassroots non-profit organization with diagnosed ADNP children 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 The SHARE because you CARE - ADNP Patient Registry Project so that your data can be included in this valuable research.
YOU CAN TAKE PART IN HELPING US ADVANCE THE UNDERSTANDING OF ADNP SYNDROME.