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Ninth Italian Site Investigator Meeting - Naples, Italy


Prof. De Michele opened the SIM Italian meeting 2013 with a warm welcome and a short introduction. The morning session of the meeting was focused on the activities related to REGISTRY, ENROLL-HD and EHDN Working Groups. The afternoon session was dedicated to scientific presentations.


During the morning session Dr. Zinzi provided the attendees with an overview of the current status of the REGISTRY study at the Italian sites with particular focus on Registry substudies.
Her presentation was followed by a detailed description of the activities related to the transition from Registry to ENROLL-HD provided by Dr. Adrien Come. An appeal for cooperation was made to all the personnel involved in the REGISTRY study in order to reduce as much as possible the time of transition and enable to initiate the ENROLL study as soon as possible.
In the second part of his presentation Dr. Come presented a summary of the main Protocol Violations detected in the REGISTRY study.
Prof. Landwehrmeyer presented the main objectives, purposes and outline of the ENROLL-HD study with particular focus on the differences between ENROLL-HD protocol and the current REGISTRY protocol. Prof. Cortelli raised the issue of tissue donation foreseen in the ENROLL-HD protocol in relation to the current national regulation.
Prof. Burgunder provided a description of the activities, strategy and achievements of the current EHDN Working Groups with particular focus on the Motor Working Group.
Dr. Lamanna presented the ENROLL-HD start-up activities (Starter packets, Regulatory/EC submission and contract negotiation) and invited the attendees to register in the Global Site & Investigator Database.
The morning session ended with an overview of the current clinical trials by Prof. Burgunder.


Dr. Elena Salvatore opened the afternoon session with a presentation on Default Mode Network in HD patients, followed by the presentation of Prof. Frontali on the recent recommendations issued by the Genetic Testing and Counseling working group on diagnostic test.
Prof. De Tommaso and Dr. Serpino presented two projects run by the group of Bari, respectively on N-acetylaspartate (NAA) as biomarker of neurodegeneration and event-related responses to unpleasant stimuli in HD patients, and invited the Italian investigators to take part in the projects.


For additional information please refer to the presentation available on the EHDN website at: https://www.euro-hd.net/html/network/locations/italy/coordination/docs


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