Message from VALDIG Chair – DTA with ERN Rare-Liver

Mar 26, 2024

Dear VALDIG members,

It has been almost 10 months since our last general assembly, during which we emphasized the importance of establishing a Data Transfer Agreement (DTA) with ERN Rare-Liver to store our VALDIG database there. Regrettably, since the assembly, only one new member has adhered to this crucial step.

We understand that navigating this process is not an easy task, but I want to reiterate just how crucial it is. Having a registry of patients with vascular liver disease, enabling us to conduct multicentric studies and advance patient management, lies at the core of our group’s mission.

Unfortunately, bureaucratic and legal hurdles at the European level are proving challenging. However, we must adhere to regulations and adapt our registry to the new era.

From VALDIG, Laure Marco, and myself, we stand ready to assist you with the process and share all the details, as we have already completed the DTA. This step will facilitate future work, including data sharing across centres and eligibility for European grants—opportunities that would otherwise be unavailable to us as a group if we do not adapt.

We encourage you to complete the process and contact us if you require assistance.

Warm regards,

Virginia Hernández-Gea