The International ADNP Patient Registry is Here!
PLEASE ENROLL TODAY
PLEASE ENROLL TODAY
If you have a child with a confirmed diagnosis of ADNP syndrome, please consider enrolling in our International Patient Registry. It's easy and secure!
SHARE because you CARE
The International ADNP Patient Registry is the first-ever global patient registry created to make patient's de-identified information easily accessible for the global research community studying ADNP syndrome to help accelerate research for treatments and cures. If you are patient or a parent of a child with ADNP, no matter where in the world you live, your participation is critical at helping advance the understanding of this disorder.
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 and the lack of information has stopped the advancement and publications outlining the true worldwide patient population. Our organization is working to change that by creating sharable de-identified information that will make a meaningful difference for ADNP scientists, researchers, pharma and biotech companies around the world.
By creating a robust database, 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.
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 SHARE because you CARE patient registry so that your data can be included in this valuable research, no matter where in the world you live. We need you to help us expand the understanding of ADNP!
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.
What are the benefits:
One word - Information! There is an extreme 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. We hope to unify the patient and research community with this registry following strict data sharing guidelines.
The International ADNP Patient Registry is the first-ever global patient registry created to make patient's de-identified information easily accessible for the global research community studying ADNP syndrome to help accelerate research for treatments and cures. If you are patient or a parent of a child with ADNP, no matter where in the world you live, your participation is critical at helping advance the understanding of this disorder.
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 and the lack of information has stopped the advancement and publications outlining the true worldwide patient population. Our organization is working to change that by creating sharable de-identified information that will make a meaningful difference for ADNP scientists, researchers, pharma and biotech companies around the world.
By creating a robust database, 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.
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 SHARE because you CARE patient registry so that your data can be included in this valuable research, no matter where in the world you live. We need you to help us expand the understanding of ADNP!
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.
What are the benefits:
One word - Information! There is an extreme 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. We hope to unify the patient and research community with this registry following strict data sharing guidelines.
The SHARE because you CARE Global Patient Registry
If you have any questions, please email registry@adnpfoundation.org
