ITHACA Registry governance meeting on February 11 : Zoom Meeting access details

Subject : ITHACA registry governance meeting

Time: Feb 11, 2020 05:00 PM Paris

Background : 

The implementation of the ILIAD registers in the ITHACA network will finally be overseen by the Paris coordination team. A pilot version of the registry, which can be implemented by each HCP, should be made available by the Groningen team in the next few months.

It is therefore important to anticipate several steps in the implementation of the system during the Zoom meeting scheduled for February 11th:

  1. The Board needs to validate the governance of the network. I have attached to this email the part of the project that describes it, and that I ask you to validate after discussion during the Zoom meeting. Indeed, because of our funding by European public funds, part of our data must be freely accessible (in an aggregated form at least, and with the strictest respect for GDPR rules.  However, it is possible that, in the future, certain aspects may be dictated to us by the European Commission.
  1. List of participating HCPs. By the end of February, we need to identify the list of HCPs that wish to implement the ILIAD client registry. A priori, 2 operating modes are possible:

– local implementation of ILIAD in the HCP’s IT system, protected by the institution’s firewalls.

– registration of patients in the central ILIAD database (in Groningen) – if local implementation is not possible.

  1. List of ILIAD correspondents. For each participating HCP, we need to know:

– the person who will be in charge of the administrative and regulatory management of the database, and

– the person in charge of IT management (deployment of the base on site…) with their email and phone number.

This information is essential for the coordination team and the development team in Groningen to prepare the local installation of each customer, and the conditions under which these bases can be interrogated.

It is very important to identify regulatory obstacles as quickly as possible, in order to be able to approach the Board of Member States for each of the countries represented in ITHACA. Morris Swertz’s team should provide us in the coming weeks with a document describing the technical specifications of the installation.

  1. Constitution of an advisory ethics committee :

Concerning the content of the database:

– by default, ILIAD will include the fields imposed by Europe. It will therefore be a registry with very limited content (in order to simplify data entry): in practice, it will serve as a tool for identifying cohorts of patients. The rules allowing the encoding of genetic anomalies will be fixed at a meeting with JRC next March, in which an ITHACA delegation coordinated by A.VERLOES will participate.

– for patients with intellectual disabilities, we plan to implement a small number of additional fields. A Zoom meeting is planned in the next few weeks to determine the list of fields that should be implemented, under the supervision of the WG ID. A joint meeting with the other ERNs on the choice and definition of these fields will be held in Milan at the beginning of March. In agreement with the WG ID, Pr David KOOLEN will represent ITHACA.

Zoom meeting details :

Meeting ID: 700,081,457

Password : 838066

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