All registries should consult with the CPUA authority to agree on principles for data extraction fees. Data extracted from a registry for research purposes requires a certain amount of work, the extent of which depends on the size and complexity of the request.
This is often beyond what could be considered “routine labour” (simple work without significant costs or complications) because it could involve the anonymization of personal data and adapting the database to the variables that will be studied. In such cases, compensation can be taken out for labour. However, this must be determined on a case-by-case basis.
Data collection for the registry was made possible by significant efforts over a long period of time and is dependent on the investment of healthcare resources to report to the registers. The registry can therefore calculate in certain costs in order to continue to operate and develop the registry and provide this type of service. The practical work of managing an extraction from a registry is usually handled by the registry organization and/or a registry centre.
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