MORBIDITY DATA REGISTRIES AND SURVEILLANCE Nigel Paneth WHAT

MORBIDITY DATA: REGISTRIES AND SURVEILLANCE Nigel Paneth

WHAT SHOULD BE UNDER SURVEILLANCE? Health events (diseases or exposures) with: • HIGH FREQUENCY • HIGH LEVEL OF SEVERITY • HIGH LEVEL OF TRANSMISSIBILITY • HIGH ECONOMIC COST • HIGH POTENTIAL FOR PREVENTION

KINDS OF SURVEILLANCE 1. VITAL DATA 2. REGISTRIES 3. NOTIFIABLE DISEASES 4. SENTINEL HEALTH CARE SETTINGS 5. SENTINEL EVENTS 6. SPECIAL SURVEYS

Steps In Setting Up Surveillance 1. DETERMINE WHAT KIND OF SURVEILLANCE IS BEST FOR THE CONDITION OF INTEREST. 2. DEFINE CASENESS. 3. DEFINE THE POPULATION UNDER SURVEILLANCE.

4. DEVELOP DATA COLLECTION INSTRUMENTS. 5. DECIDE WHO THE INFORMATION GOES TO. 6. MONITOR THE SYSTEM • FOR VALIDITY • FOR USEFULNESS

Key Attributes Of Surveillance Programs 1. Nature of the event 2. Population under surveillance 3. Nature of the surveillance process 4. Continuity of the monitoring 5. To whom do the reports go?

1. NATURE OF THE EVENT UNDER SURVEILLANCE a. Death b. Disease/condition • based on screening • definitive diagnosis EXAMPLE Vital data newborn genetic screening results SEER cancer registries

1. NATURE OF THE EVENT UNDER SURVEILLANCE. (cont’d) c. exposure EXAMPLE vaccine registries behavioral risk factors d. diagnostic test mammography surveillance e. animal disease bovine TB surveillance, fox & bat rabies

2. NATURE OF THE DENOMINATOR POPULATION A. EVERYONE IN A DEFINED SETTING: EXAMPLE a. Universal Reportable diseases, vital data b. Everyone in a geographic area or areas SEER Registries

2. NATURE OF THE DENOMINATOR POPULATION (CONT’D) c. Selected sub-sets of the population d. Special samples of the populations EXAMPLE sentinel practices for influenza Behavioral Risk factors, Health Interview Survey

2. NATURE OF THE DENOMINATOR POPULATION (CONT’D) B. CONDITIONAL ON A CHARACTERISTIC: a. requires exposure b. requires special cohort membership EXAMPLE A-bomb survivors, DES daughters LBW babies

2. NATURE OF THE DENOMINATOR POPULATION (CONT’D) C. NO DENOMINATOR NEEDED: EXAMPLE SENTINEL EVENTS (highly likely to maternal be preventable) death to diphtheria

3. NATURE OF THE SURVEILLANCE PROCESS. EXAMPLE a. Active (we call them) Reyes syndrome b. Passive (they call us) most registries

4. CONTINUITY OF THE SURVEILLANCE a. once-only b. continuous monitoring EXAMPLE community survey registries

5. TO WHOM REPORTED? EXAMPLE a. state as per state law b. national 49 reportable diseases c. international plague, yellow fever, cholera, etc.