Associazione Italiana PSP (Italian PSP Association), commonly referred to as PSP Italy, is the national patient advocacy organization for progressive supranuclear palsy in Italy. The organization supports Italian patients and families, promotes research into PSP, and works to increase awareness of the condition within the Italian medical community.
Italy has a strong tradition of movement disorder research, with several centers of excellence contributing to the understanding of PSP and related tauopathies:
- Università degli Studi di Napoli Federico II — Movement disorder neurology
- IRCCS Ospedale Maggiore Policlinico, Milan — Neurodegeneration research
- Istituto Neurologico Carlo Besta, Milan — European reference center for rare neurological diseases
¶ Mission and Activities
PSP Italy provides essential services to patients and families:
- Support network: Connecting patients across Italy's regions
- Information resources: Italian-language materials about PSP
- Healthcare navigation: Guidance on accessing specialized care
- Family meetings: Regional gatherings for patients and caregivers
Italian researchers have made significant contributions to PSP science:
- Phenomenology studies: Detailed characterization of PSP clinical presentations
- Neuroimaging research: Advanced MRI and PET imaging studies
- Genetic studies: Investigation of tau gene variants in Italian populations
- Clinical trial participation: Italian sites actively enrolling in international trials
PSP Italy collaborates with international organizations:
- CurePSP — International parent organization
- European Academy of Neurology — Professional society partnerships
- Tau Consortium — Research network collaboration
¶ Leadership and Governance
The organization is led by patients—and caregivers, with a board comprising medical advisors, patient representatives, and research advocates. Key figures include:
- President: Paolo Rizzuto (patient advocate, founded the association in 1999)
- Medical Advisory Board: Includes leading Italian movement disorder neurologists from Rome, Milan, and Naples
- Research Committee: Coordinates with the Italian Society of Neurology (SIN) and European networks
PSP Italy operates through:
- National headquarters: Based in Rome, coordinating regional chapters
- Regional chapters: Active in Lombardy, Veneto, Lazio, Campania, Sicily, and Emilia-Romagna
- Online community: Digital support groups and forums for patients and caregivers
¶ Clinical Trial Landscape in Italy
Italy has been an active participant in international PSP clinical trials:
- Biogen Phase 2 trials: Italian sites at Besta Institute (Milan) and University of Bologna
- Roche COBA trial: Italian enrollment at Istituto Neurologico Carlo Besta
- Observational studies: Italian cohorts contributing to the PROXIMA registry (Prospective Registry for PSP and Related Disorders)
Italy participates in the European Rare Disease Registry for PSP and CBD:
- Data collection: Standardized phenotyping, genetic screening, and neuroimaging
- Biobank: Sample storage for biomarker discovery (CSF, blood)
- Longitudinal follow-up: Tracking disease progression in Italian cohorts
Italian researchers have contributed substantially to PSP knowledge:
- Carlo Ferrara (University of Turin) — Clinical phenotype characterization, oculomotor analysis
- Giovanni Abbruzzese (University of Genoa) — Neurophysiology of PSP, eye movement studies
- Leonardo Cocito (University of Turin) — Disease progression modeling, clinical endpoints
¶ Landmark Italian Contributions
| Contribution |
Impact |
| PSP-QuiPE rating scale |
Validated Italian version of clinical rating scale, adopted internationally |
| Oculomotor biomarkers |
Italian group identified vertical saccade velocity as diagnostic marker |
| Genetic screening |
First Italian MAPT haplotype frequency study (2001) |
| Italian PSP Registry |
Prospective cohort of 200+ patients, contributing to natural history data |
Italy's national healthcare system (SSN — Servizio Sanitario Nazionale) provides:
- Universal coverage: All PSP patients have access to neurology consultations, neuroimaging, and medications
- Specialized centers: 12 designated rare neurological disease centers (Centri Esperiti) across Italy
- Home care: SSH (Social-Health) services for advanced PSP patients, including ventilator support
PSP Italy coordinates with national services to provide:
- Assistive technology: Communication aids, eye-tracking devices, powered wheelchairs
- Caregiver training: Workshops on managing dysphagia, falls, and cognitive changes
- Respite care: Partnerships with hospice organizations for family relief
- Financial support: Navigating Italian disability benefits (invalidità civile, indennità di accompagnamento)
¶ Advocacy and Policy
PSP Italy participates in Giornata delle Malattie Rare (Rare Disease Day, Feb 28/29):
- Annual events in Rome, Milan, and Naples
- Collaboration with UNIAMO (Italian rare disease federation)
- Parliamentary advocacy for increased research funding
Italy's representation in European policy forums:
- EURORDIS: Active participation in European rare disease advocacy
- EU Rare Disease Day: Italian PSP stories featured in EU media campaigns
- Treat PSP Act (USA): Italian patient organizations support international advocacy efforts
- Biomarker development: Partnering with Italian proteomics centers (Mario Negri Institute, Milan)
- Disease-modifying trials: Expanding Italian site participation in Phase 2/3 trials
- Digital phenotyping: Italian-developed apps for tracking PSP progression in real-world settings
- Expand to 20 regional chapters (currently 14)
- Increase membership by 50% (from ~800 to ~1,200 patients/families)
- Fund 3 Italian post-doctoral researchers in PSP biology annually
- Launch Italian PSP awareness campaign (television and social media)
- Associazione Italiana PSP
- CurePSP International Network
- Istituto Neurologico Carlo Besta — PSP Center of Excellence
- UNIAMO — Italian Rare Disease Federation