As a guest user you are not logged in or recognized by your IP address. You have
access to the Front Matter, Abstracts, Author Index, Subject Index and the full
text of Open Access publications.
This paper explores key success factors for the development and implementation of a Common Data Model (CDM) for Rare Diseases (RDs) focusing on the European context. Several challenges hinder RD care and research in diagnosis, treatment, and research, including data fragmentation, lack of standardisation, and Interoperability (IOP) issues within healthcare information systems. We identify key issues and recommendations for an RD-CDM, drawing on international guidelines and existing infrastructure, to address organisational, consensus, interoperability, usage, and secondary use challenges. Based on these, we analyse the importance of balancing the scope and IOP of a CDM to cater to the unique requirements of RDs while ensuring effective data exchange and usage across systems. In conclusion, a well-designed RD-CDM can bridge gaps in RD care and research, enhance patient care and facilitate international collaborations.
This website uses cookies
We use cookies to provide you with the best possible experience. They also allow us to analyze user behavior in order to constantly improve the website for you. Info about the privacy policy of IOS Press.
This website uses cookies
We use cookies to provide you with the best possible experience. They also allow us to analyze user behavior in order to constantly improve the website for you. Info about the privacy policy of IOS Press.