The Leprosy Registry

The leprosy registry was established by royal decree in 1856. With help from the district medical officers, a rather extensive system of forms and lists were created to collect a variety of information about each individual. The work of registering and analysing the data was highly labour intensive, and is a testament to the strong faith that it would yield results. The registry did indeed provide new knowledge in a number of different areas.

For the health authorities, the most important goal was to determine the prevalence of the disease and who was contracting leprosy. They could use the registry to plan which measures were to be implemented, assess their effectiveness, follow the progression and regression of the disease in different regions, and calculate how many places in care institutions were needed.

For the medical experts, it was crucial to understand the cause of the disease. It was the registry’s extensive data that allowed Armauer Hansen to substantiate his theory that leprosy was an infectious disease. He could prove that the decline of new cases was strongest in areas where the those with leprosy had been isolated through hospitalisation.

The significant scientific results yielded from the registration work have often been overshadowed by Hansen’s discovery of the leprosy bacteria. However, the leprosy registry has in recent years received increasing attention in Norway and internationally as a pioneering and significant work of innovation.

The leprosy registry is considered the first ever national patient registry and became a model for other registries, not only in Norway but around the world. The leprosy registry now forms an important part of the Leprosy Archives in Bergen, which was inscribed on UNESCO’s list of documentary heritage Memory of the World in 2001. The registry contains information about 8,231 individuals with leprosy in Norway, from 1856 up until the last cases were diagnosed in the 1950s.