Registry to Speed a Cure


Patient registries can be a powerful tool. They can help researchers:

  • follow the course of a disease and the effects of therapies by providing real world data

  • learn more about how patients are diagnosed and treated and how they respond to treatments

  • examine factors that affect outcomes and quality of life

  • support research collaboration among investigator

  • facilitate multiple avenues of research on a disease

Registries can provide a natural history of a disease(natural history registry), showing when certain things happen to a patient. They can be used to compare people with APBD who are treated with those who are untreated. The aim is to speed up the development of drugs and treatments and to improve the quality of life for those living with APBD.

The APBD patient registry will consist of a secure database to store contact information and basic clinical data on APBD patients. APBD patients can be confident that the registry is maintained in an anonymous and protected way, ensuring confidentiality. Patients who would like to share their stories and learn from one another can also choose to make their contact information available to other patients.


Goal: $15,000.00

$15,000.00 raised

What your donation will fund:

Annual maintenance fee $15,000

Naming opportunity available