The SHARE because you CARE
ADNP GLOBAL PATIENT REGISTRY
SHARE Because You CARE!
The SHARE because you CARE - ADNP Patient Registry is the first-ever global patient registry to help accelerate research for ADNP syndrome. Our patient registry will also continue as a longitudinal registry to help create the first ever natural history study of ADNP patients of all ages throughout their lifespan to help us better understand the long term natural progression and effects, as well as life expectancy of ADNP syndrome. Our registry is designed to collect medical information and patient-reported information about ADNP Syndrome so your participation is critical. No matter where in the world you live, we need to understand the location of patients, the demographics, and the level of affected individuals and the struggles they face in order to understand what the unmet need of treatment truly is for ADNP patients worldwide.
By creating a robust database and collaborating with world-leading scientific research experts around the world, the ADNP Kids Research Foundation seeks to expand knowledge and generate insights and research initiatives supporting the accelerated development of targeted and effective approaches in the treatment of ADNP Syndrome. This data will ultimately assist the ADNP community in generating a natural history study, patient outcome reports, better patient care and make a meaningful difference in understanding this disorder in order to find ways to help our children and adults living with ADNP.
Why Should YOU SHARE?
Your 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 made a difference now and for future generations to come!
Why Do WE CARE?
As a grassroots non-profit organization linked to diagnosed ADNP children/patients 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 so that your data can be included in this valuable research.
What is a patient-powered registry?
A Patient Registry is an organized system that collects uniform patient/parent reported data, clinical and other related medical documents and information, to evaluate specified symptoms and outcomes for a population defined by a particular disease or condition.
What is our Registry purpose?
Our registry purpose is to build a global database which is necessary to accelerate the disease understanding, so that we may find meaningful treatments for our children and all individuals living with ADNP syndrome, and to ultimately one day help FIND A CURE.
ADNP syndrome is a rare disease without a single uniform global Patient Registry. A particular concern and road block for good research is when multiple small site patient registries exist for a single rare condition, resulting in small data sets for each registry. These types of registries are less able to draw valid conclusions for the population. Our organization is working in collaboration with researchers around the world in an effort to share information, and work together, in a way that will make a meaningful difference for ADNP scientists, pharma and biotech companies around the world as they research ADNP syndrome.
What are the benefits:
In addition to these benefits, one of our main concerns is the lack of "shared" patient-friendly data. We believe sharing "de-identified" group data reports back with the patient community will engage and empower the ADNP community by giving needed information to the families who deal with ADNP on a daily basis. Our registry will kick out real time summaries in the Dashboard set by each parent, to view real time data on the syndrome as it is collected into the registry. We hope to unify the patient and research community with this registry following strict data sharing guidelines.
The first phase of our registry will take place in multiple questionnaire surveys. Over time, the second phase will involve additional questionnaires, many with the same title and questions, which will be added or sent out in order to do a "longitudinal study" to track the changes as the child ages to identify the progression of the disease.
Our mission has been to move research forward FAST, and we have. To continue our mission, and to help push research forward FAST, we are asking families who qualify and are interested in participating to please sign up for the registry and fill out all of the surveys ASAP and to incentivize you to do so, we will send you a Amazon Gift Card for $100.00 when you have enrolled and completed the registry questionnaires.
The SHARE because you CARE - ADNP Patient Registry is the first-ever global patient registry to help accelerate research for ADNP syndrome. Our patient registry will also continue as a longitudinal registry to help create the first ever natural history study of ADNP patients of all ages throughout their lifespan to help us better understand the long term natural progression and effects, as well as life expectancy of ADNP syndrome. Our registry is designed to collect medical information and patient-reported information about ADNP Syndrome so your participation is critical. No matter where in the world you live, we need to understand the location of patients, the demographics, and the level of affected individuals and the struggles they face in order to understand what the unmet need of treatment truly is for ADNP patients worldwide.
By creating a robust database and collaborating with world-leading scientific research experts around the world, the ADNP Kids Research Foundation seeks to expand knowledge and generate insights and research initiatives supporting the accelerated development of targeted and effective approaches in the treatment of ADNP Syndrome. This data will ultimately assist the ADNP community in generating a natural history study, patient outcome reports, better patient care and make a meaningful difference in understanding this disorder in order to find ways to help our children and adults living with ADNP.
Why Should YOU SHARE?
Your 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 made a difference now and for future generations to come!
Why Do WE CARE?
As a grassroots non-profit organization linked to diagnosed ADNP children/patients 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 so that your data can be included in this valuable research.
What is a patient-powered registry?
A Patient Registry is an organized system that collects uniform patient/parent reported data, clinical and other related medical documents and information, to evaluate specified symptoms and outcomes for a population defined by a particular disease or condition.
What is our Registry purpose?
Our registry purpose is to build a global database which is necessary to accelerate the disease understanding, so that we may find meaningful treatments for our children and all individuals living with ADNP syndrome, and to ultimately one day help FIND A CURE.
ADNP syndrome is a rare disease without a single uniform global Patient Registry. A particular concern and road block for good research is when multiple small site patient registries exist for a single rare condition, resulting in small data sets for each registry. These types of registries are less able to draw valid conclusions for the population. Our organization is working in collaboration with researchers around the world in an effort to share information, and work together, in a way that will make a meaningful difference for ADNP scientists, pharma and biotech companies around the world as they research ADNP syndrome.
What are the benefits:
- To characterize and describe our patient population as a whole.
- To facilitate the development of international best practices and care management guidelines and recommendations for improving quality of life.
- To provide needed information for ongoing and future IRB approved research and clinical trials.
- To generate patient needs and drug trial patient outcome studies.
In addition to these benefits, one of our main concerns is the lack of "shared" patient-friendly data. We believe sharing "de-identified" group data reports back with the patient community will engage and empower the ADNP community by giving needed information to the families who deal with ADNP on a daily basis. Our registry will kick out real time summaries in the Dashboard set by each parent, to view real time data on the syndrome as it is collected into the registry. We hope to unify the patient and research community with this registry following strict data sharing guidelines.
The first phase of our registry will take place in multiple questionnaire surveys. Over time, the second phase will involve additional questionnaires, many with the same title and questions, which will be added or sent out in order to do a "longitudinal study" to track the changes as the child ages to identify the progression of the disease.
Our mission has been to move research forward FAST, and we have. To continue our mission, and to help push research forward FAST, we are asking families who qualify and are interested in participating to please sign up for the registry and fill out all of the surveys ASAP and to incentivize you to do so, we will send you a Amazon Gift Card for $100.00 when you have enrolled and completed the registry questionnaires.
If you have any questions, please email admin@adnpfoundation.org