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 EXAMPLE a. DeathVital data b. Disease/condition based on screening newborn genetic screening results definitive diagnosisSEER cancer registries

1. NATURE OF THE EVENT UNDER SURVEILLANCE. (cont’d) EXAMPLE c. exposurevaccine registries behavioral risk factors d. diagnostic testmammography surveillance e. animal diseasebovine TB surveillance, fox & bat rabies

2. NATURE OF THE DENOMINATOR POPULATION A. EVERYONE IN A DEFINED SETTING: EXAMPLE a. UniversalReportable diseases, vital data b. Everyone in aSEER geographic areaRegistries or areas

2. NATURE OF THE DENOMINATOR POPULATION (CONT’D) EXAMPLE c. Selected sub-setssentinel of the populationpractices for influenza d. Special samples of Behavioral the populationsRisk factors, Health Interview Survey

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

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

3. NATURE OF THE SURVEILLANCE PROCESS. EXAMPLE a. ActiveReyes (we call them)syndrome b. Passivemost registries (they call us)

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

5. TO WHOM REPORTED? EXAMPLE a. stateas per state law b. national49 reportable diseases c. internationalplague, yellow fever, cholera, etc.