If you have been affected by a urea cycle disorder or propionic acidemia as a patient or caregiver you can join the PA International Patient Registry.
The Registry empowers every PA patient and family around the world to make a difference in the fight to conquer these disorders. By joining the Registry and completing your profile survey about your own unique experience with PA, you are contributing to a global database about the prevalence of the disorders, the accessibility of diagnosis, care and treatments, and how the disorder affects patients. The information you enter is anonymized and pooled with the anonymized data from other participants to create a centralized resource that is vital to helping researchers learn more about PA, accelerating the development of new research and treatments, identifying issues that need research, and improving care for patients with these conditions.
Protecting patient data is our top priority. The registries are managed in a rigorous manner to comply with HIPAA and FISMA data and patient protection laws.
The PA Registry recognizes the importance of global collaboration. One of the goals of the Registry is to enable researchers from around the world to work together to speed research progress. The Registry connects all those interested in accelerating PA research -- patients, families and researchers -- with a resource that has never before been available in one place. As a participant in the Registry, you will be able to explore data and view how your answers may compare to others. You will also have access to information about new research for PA and ways to participate in studies and clinical trials. By logging into your private, confidential and secure profile, you can review the results of published and unpublished studies that result from the Registry.
For questions: email coordinator@ucdparegistry.org
Visit our website: www.pafoundation.com
If you have been affected by a urea cycle disorder or propionic acidemia as a patient or caregiver you can join the PA International Patient Registry.
The Registry empowers every PA patient and family around the world to make a difference in the fight to conquer these disorders. By joining the Registry and completing your profile survey about your own unique experience with PA, you are contributing to a global database about the prevalence of the disorders, the accessibility of diagnosis, care and treatments, and how the disorder affects patients. The information you enter is anonymized and pooled with the anonymized data from other participants to create a centralized resource that is vital to helping researchers learn more about PA, accelerating the development of new research and treatments, identifying issues that need research, and improving care for patients with these conditions.
Protecting patient data is our top priority. The registries are managed in a rigorous manner to comply with HIPAA and FISMA data and patient protection laws.
The PA Registry recognizes the importance of global collaboration. One of the goals of the Registry is to enable researchers from around the world to work together to speed research progress. The Registry connects all those interested in accelerating PA research -- patients, families and researchers -- with a resource that has never before been available in one place. As a participant in the Registry, you will be able to explore data and view how your answers may compare to others. You will also have access to information about new research for PA and ways to participate in studies and clinical trials. By logging into your private, confidential and secure profile, you can review the results of published and unpublished studies that result from the Registry.
