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WORKPACKAGE 4

To deploy a hub-and-spoke network for the efficient referral and management of familial AD and FTLD.

PI: Prof. Alessandro Padovani

Collaborators: Federica Gottardi, Rosanna Turrone, Roberta Ranelli, Giovanni B Frisoni, Martina Bocchetta, Michela Pievani, Anna Mega.

Hub and Spoke Network

The main aims of Work Package 4 is to (1) define a network for an efficient referral and management of familial AD and FTLD, (2) promote the network within the National Scientific Societies and (3) disseminate the network.

The criteria for the Hubs and Spokes are defined below:

Hub Centers are Sites with the appropriate knowledge and facilitis to adopt all the procedures included in the ItalianDIAfN Protocol. We defined the three following Hubs Network. The Clinical Hubs Network is required to adopt the ItalianDIAfN Genetic Counselling Protocol and its procedures (Link – WP3 – link in cartella 3_Link-WP-del-file-HOME), to dispone of a multidisciplinary team and to have the accessibility to a Genetic Laboratory for samples analysis. The Research Hubs Network is required to adopt the ItalianDIAfN Research Protocol and its procedures (Link – WP1 – link in cartella 3_Link-WP-del-file-HOME), to collect imaging and electrophysiological data, biological samples and clinical and neuropsychological data. The Clinical Trial Hubs Network is required to adopt the DIAN-TU Protocol and its procedures. DIAN-TU is a clinical trial directly related to the DIAfN study, but it enrolls only AD subjects (for more details about the DIAN-TU Study, click here – Link1_DIAN-TU – link in cartella 1_Link-1-2-3-del-file-HOME).

Spoke Centers are Sites not able to adopt all the procedures defined in ItalianDIAfN or DIAN-TU Protocols but able to refer their familial AD and FTLD patients to Clinical, Research or Clinical Trial Hub Centers (i.e. Neurology, Dementia Centers). This is permitted only if a structured and consolidated collaboration between a Hub and the potential Spoke is reported.

The Hub and Spoke Network has been introduced to National and International Scientific Societies. (1) SINdem-Perugia (13-15 March 2013) for the VIII National Congress; (2) ICAD, Boston (13-18 July 2013) for the International Conference on Alzheimer’s Disease (3) Establishing Therapeutic Efficacy in Familial Frontotemporal Degeneration conference-San Francisco (16 November 2013).

All the six ItalianDIAfN Centers (Fatebenefratelli Brescia, Università di Brescia, Policlinico di Milano, Besta Milano, Università di Firenze, Centro Neurogenetica di Lamezia Terme) satisfy the Hubs Network criteria. After a recent “Call4Hubs”, additional six Sites has been classified as Hub Centers (Torino Università degli Studi, Verona Università degli Studi, Perugia Univesità degli Studi, Roma Università Sapienza, Bari, Cagliari Università degli Studi). Hub Centers are currently identifying eligible Spoke Sites (“Call4Spokes”).

For Clinical and/or Research Sites: If your Site satisfies the specific criteria for being classified as Hub or wishes to propose new Spokes to be included in the ItalianDIAfN Network, please complete the following form and send it to: ItalianDIAfN@gmail.com