The International ADNP Patient Registry is Here!
PLEASE ENROLL OR UPDATE YOUR REGISTRY TODAY!
PLEASE ENROLL OR UPDATE YOUR REGISTRY TODAY!
As a parent or patient, your contribution to advancing ADNP syndrome research is crucial. Enrolling in the registry with a "confirmed genetic diagnosis" is the most significant way you can help accelerate progress in this field now. Rest assured, the enrollment process is secure and straightforward.
Participating in the registry is entirely free, and it entails completing questionnaires. You can also choose to take part in our Natural History Study, which will enable us to track your child's progress over time and gain a deeper understanding of how ADNP patients age.
By sharing your information, you will aid researchers in better characterizing and comprehending the diverse conditions associated with ADNP syndrome. Ultimately, this will aid in the development of effective treatments and therapies.
Researchers can use the registry to:
Patients can use the registry to:
Participating in the registry is entirely free, and it entails completing questionnaires. You can also choose to take part in our Natural History Study, which will enable us to track your child's progress over time and gain a deeper understanding of how ADNP patients age.
By sharing your information, you will aid researchers in better characterizing and comprehending the diverse conditions associated with ADNP syndrome. Ultimately, this will aid in the development of effective treatments and therapies.
Researchers can use the registry to:
- Analyze de-identified patient-reported data
- Recruit patients to participate in studies
- Collect novel data by adding new questions to the registry
- Better understand the complexities of the syndrome
- Better understand what is most important to families/patients
Patients can use the registry to:
- Report specific conditions you/your child present
- Drive progress toward treatment options and therapies
- Gain access to future clinical studies
- Gain access to summarized live undated information that is important to you/your child
- Help identify what is important and meaningful to our community
ADDITIONAL INFORMATION
The International ADNP Patient Registry is the world's first global patient registry for ADNP syndrome, providing easy access to de-identified patient information for the global research community. Participation from ADNP patients and parents worldwide is crucial to advancing understanding of this disorder.
Traditional small site patient registries pose a challenge for research due to limited data sets and unreliable conclusions. The ADNP Kids Research Foundation aims to overcome this obstacle by creating a comprehensive database that can be shared with scientists, researchers, and biotech companies worldwide.
With this robust database, we can expand knowledge and generate insights that support the development of effective treatments for ADNP Syndrome. Join us in our efforts to accelerate research and make a meaningful difference in the lives of those affected by this disorder.
Why Should YOU SHARE
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 make a difference now and for future generations to come!
Why do we CARE
One word - Information! There is an extreme lack of "shared" patient-friendly data. We hope to unify the patient and research community with this registry following strict data sharing guidelines, and curate important information to help researchers develop outcome measures and a Natural History Study for future therapeutics and treatment trials.
The International ADNP Patient Registry is the world's first global patient registry for ADNP syndrome, providing easy access to de-identified patient information for the global research community. Participation from ADNP patients and parents worldwide is crucial to advancing understanding of this disorder.
Traditional small site patient registries pose a challenge for research due to limited data sets and unreliable conclusions. The ADNP Kids Research Foundation aims to overcome this obstacle by creating a comprehensive database that can be shared with scientists, researchers, and biotech companies worldwide.
With this robust database, we can expand knowledge and generate insights that support the development of effective treatments for ADNP Syndrome. Join us in our efforts to accelerate research and make a meaningful difference in the lives of those affected by this disorder.
Why Should YOU SHARE
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 make a difference now and for future generations to come!
Why do we CARE
One word - Information! There is an extreme lack of "shared" patient-friendly data. We hope to unify the patient and research community with this registry following strict data sharing guidelines, and curate important information to help researchers develop outcome measures and a Natural History Study for future therapeutics and treatment trials.
The SHARE because you CARE
ADNP Patient Registry
If you have any questions, please email registry@adnpfoundation.org
