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Disease Registry

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• A registry is basically a list of all the patients in the defined population who have a particular condition.
• It is different from ‘notification’ where the case is reported and is counted once.
• A register requires that a permanent record be established
– that the cases be followed up and
– that basis statistical tabulation be prepared both on frequency and on survival
– Hence mostly for chronic conditions
– In addition the patients on a register are frequently be the subjects of special studies
• It helps keep track of
– when they were seen last,
– what tests and treatments they have had and
– Survival etc.
• Morbidity registers are a valuable source of information such as the
– duration of illness, case fatality and survival
– Natural history of disease especially chronic diseases
• Limitations:
– Absence of a defined population base, hence incidence and prevalence rates can’t be calculated
• Population based registry can provide this if complete reporting can be ensured
– Morbidity registers exist only for certain diseases and conditions such as stroke, myocardial infarction, cancer, blindness, congenital defects and congenital rubella etc.

There are two types of registries:
Hospital based:
It involves recording of information on the patients seen in a particular hospital. The primary purpose of hospital based registries is to contribute to patient care by providing readily accessible information on the patients, the treatment received and its results. The data is also used for clinical research and for epidemiological purposes.
The objectives of hospital based registry:
• Assess patient care
• Participate in clinical research to evaluate therapy
• Provide an idea of the patterns of cases
• Contribute to follow up of the patients
• Epidemiological research through case control studies
• Show time trends in the stage of diagnosis
• Help study the quality of care for the patients in the hospitals
Population-Based Registry:
A population-based disease registry contains and tracks records for people diagnosed with a specific type of disease who reside within a defined geographic region (i.e., a community, city, or state-wide)
The major concern of Population Based Registries is to calculate the incidence rates.
Population Based Registry systematically collects information on all reportable cases occurring in a geographically defined population from multiple sources.
• The comparison and interpretation of population based incidence data support population-based actions aimed at reducing the burden in the community.
• The systematic ascertainment of incidence from multiple sources can provide an unbiased profile of the burden in the population and how it is changing over time.
• These registries can provide data for planning and evaluating control programmes.

Disease Registry in India:
National Centre for Disease Informatics and Research, ICMR operates following disease registries in the country:
• National Cancer Registry Programme
• Registry of people with diabetes in India with young age at the onset
• National stroke registry program

National Inst of Health: List of Registries: available at: Accessed on 9 July 2016
ICMR: National Center for Disease Informatics and Research. Available on: Accessed on 9 July 2016
For lecture on sources of health information click