Registry data storage and curation.

The storage of patient and medical information in a disease registry is a critical concept for consideration during registry design and development. The choice of data storage methods may influence the ability to access data in the future; the ability to store data long-term; and the ability to exchange data with other registries or research projects as required. Additionally choosing a data storage method involves a certain degree of uncertainty in an era that has gone from the file cabinet to the five inch floppy to the cloud in a matter of 35 years. In preparing this section of the guideline we reviewed available scholarly and grey literature resources; consulted with disease, registry, legal, ethics, privacy, and information technology (IT) experts; and consulted appropriate legislation and policy documentation in Canada.