COLLABORATION. On February 15 next year, the current contract with the National Board of Health and Welfare for the assignment to produce and update its database of rare diagnoses will be discontinued. Because the assignment is ending, the University of Gothenburg has begun to shut down the Swedish Information Centre for Rare Diseases.
The Swedish Information Centre for Rare Diseases (IRD) is a knowledge center for the dissemination of information about rare diseases. According to Jovanna Dahlgren, professor of pediatrics and head of the department at the University of Gothenburg where IRD is organizationally located, this is a field in which it may otherwise be difficult to obtain accurate and scientifically based information.
“Medical and other professionals who encounter people with rare diagnoses use the database, and for families whose children have these rare diagnoses, the information provided by IRD and its network of medical specialists is invaluable. IRD provides all who need it with robust, evidence-based and easily accessible information about diseases that may be debilitating and severe.”
IRD has five employees. Since 2002, the organization has been financed by the National Board of Health and Welfare and regularly extended through new contracts. For about the past year, the National Board of Health and Welfare has applied a new legal precedent entailing that the assignment must be procured in competition. This procurement procedure has taken some time for several reasons. Because the contract runs out on February 15 next year, when the materials and equipment will also be handed over to the National Board of Health and Welfare, the University of Gothenburg has now begun to close the center.
“We’ve been anticipating the procurement for a long time. It’s been a complicated process within the National Board of Health and Welfare to bring this about, due among other reasons to discussions about how the database would ultimately be taken over by Sweden’s municipalities and county councils,” says Jovanna Dahlgren.
The IRD’s activities began as a regional knowledge database at Östra Hospital in 1995 and were later developed into the IRD at the University of Gothenburg, with a national assignment from the National Board of Health and Welfare. The database IRD has built, and for which it is responsible on behalf of the National Board of Health and Welfare, contains updated and easily accessible, very high-quality information about approximately 320 rare diagnoses. The IRD has created a comprehensive network of leading medical specialists and special interest groups for users. The assignment has also included helping individuals as well as people in various care professions to search for and find information about rare diagnoses.
The National Board of Health and Welfare has not yet been able to announce when the procurement of the assignment will take place, nor is it clear precisely what conditions will apply for the procurement.
The Swedish criteria for a diagnosis to be considered rare are that the disease is found in no more than 100 people per million residents, and that it leads to disability.
You can visit the National Board of Health and Welfare’s knowledge database of rare diagnoses here: https://www.socialstyrelsen.se/stod-i-arbetet/ovanliga-diagnoser/
TEXT: ELIN LINDSTRÖM