Applying Genetics and Public Health Strategies to Primary
Immunodeficiency Diseases November 8-9, 2001 ~ Atlanta, Georgia
Prepared by: Office of Genomics and Disease Prevention, Centers
for Disease Control and Prevention Department of Health and
Human Services SESSION II. PUBLIC HEALTH ASSESSMENT OF PI
DISEASES Disease registries are designed to actively collect
patient-specific information from multiple sources over time.
They can be either case or hospital-based or population-based.
Case-based registries are usually designed to improve patient
care but can be useful for studying rare diseases. Case-based
registries provide useful clinical and research information but
cannot be used to calculate population-based rates; limitations
include lack of representativeness and standardized case
definitions. Population-based registries collect standardized
information on all cases of a disease in a geographically
defined area. Data can be used to determine disease incidence,
identify subgroups at increased risk, exam