|
Adult Polyglucosan Body Disease
Patient/Family Registry
|
|
|
Welcome to the APBD Registry
|
The APBD Research Foundation, in collaboration with the Data Management Unit in the Biostaistics Department of Columbia University's
Mailman School of Public Health, is establishing a patient registry to collect data on patients afflicted with Adult Polyglucosan
Body Disease and their relatives. The registry will enable the research team to answer questions about the disease, such as:
- What is the natural course of the disease?
- What process and metrics should be incorporated to track quality of patient care?
- Does a treatment lead to long-term benefits or harm, including delayed complications?
- How is disease progression affected by available therapies?
The APBD Research Foundation is encouraging patients and their close relatives to join the registry to assist the research team in studying
and developing treatments to cure the disease or slow its progression.
What is the APBD registry?
Tne APBD registry is a database designed to store medical and contact information about patients with APBD, as well as their family members.
Disease registries also exist for many other disorders. The information in the APBD registry will be stored in a database that is managed
by Columbia University in New York City. The purpose of a disease registry is twofold: 1) to have ready access to patient
contact information for upcoming research studies, and 2) to have ready access to clinical data for research studies. In some cases, you
could be contacted for possible recruitment into research studies, or investigators may simply wish to study your clinical information without
the need to contact you.
What does joining the APBD registry mean?
If you choose to participate in the APBD registry, you will enter data about yourself into this web site. The web pages where data is entered are encrypted,
and meet Columbia University's high standards for data security. Any information you choose to submit, including your contact information and
clinical data, will be stored in a computerized database. No one outside approved staff at Columbia Univesity will ever have access to any identifying
information about you. Researchers who receive approval from the APBD Research Foundation will receive clinical data on all registry participants,
with all identifying information removed.
|
|
|
Data Management Unit
722 W 168 Street | Rm 610 | New York, NY 10032
data_mgmt_biostat@cumc.columbia.edu | 212.342.2000
|
|
|
|