Descrizione del progetto
Un’Europa unita nell’obiettivo di realizzare cure ottimali per il morbo di Parkinson
I pazienti affetti da morbo di Parkinson (PD, Parkinson’s disease) manifestano una miriade di complicanze motorie e non, che comportano la progressiva perdita di autonomia nelle attività della vita quotidiana. Ciò determina significativi problemi a livello fisico e psicosociale, ostacolando la continuità terapeutica. Il progetto PD_Pal, finanziato dall’UE, sta lavorando a un nuovo modello di cure palliative che possa essere facilmente attuato nel caso in cui la disabilità limiti il paziente in termini di mobilità e indipendenza. Il progetto intraprenderà una sperimentazione controllata randomizzata al fine di convalidare l’efficacia del modello di cure palliative proposto e di trasferire le conoscenze generate a tutti i paesi europei. Attraverso nuove linee guida di gestione del PD, i ricercatori di PD_Pal puntano a concretizzare protocolli di cure ottimali per i pazienti affetti da tale patologia in tutta Europa.
Obiettivo
Parkinson’s Disease (PD) is the second most common neurodegenerative disorder and is characterized in its advanced stages by motor and non-motor complications causing progressive loss of autonomy in activities of daily living, poor quality of life, marked caregiver distress, and high utilization of medical services. Similar to cancer patients, albeit for much longer duration, PD patients have considerable (and mounting) unmet physical, psychosocial and spiritual needs, and experience great problems with continuity of care.
The overall ambition of PD_Pal is to validate a new model of palliative care which would be easily integrated with traditional management when disability limits mobility and independence. PD_Pal will provide an added layer of support to patients, their loved ones, and treating clinicians.
PD_Pal randomised controlled trial will provide evidence on the effectiveness of specialized, multidisciplinary, outpatient palliative care intervention (Advance Care Planning) in improving family satisfaction, symptom management and quality of life. PD_Pal will also further prove the feasibility and economic sustainability of this approach by the active involvement of patients lay associations as well relevant medical societies.
PD_Pal team includes leading experts in both neurology and palliative care with key-roles in both national and international PD working groups. PD_Pal will develop a new set of evidence-based Guidelines and a Massive Online Course (MOOC) for Palliative Care in PD involving in the process experts from the European Association for Palliative Care, the European Academy of Neurology and the Movement Disorders Society. Thus, PD_Pal is best positioned to transfer this knowledge to all European countries and ensure that “PD_Pal Guidelines” will translate into best practice. The PD_Pal MOOC “Best Care for People with Late Stage Parkinson” will be integrated into the WHO supported interdisciplinary post-graduate palliative care curriculum.
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Vedi altri progetti per questo bandoBando secondario
H2020-SC1-2018-Single-Stage-RTD
Meccanismo di finanziamento
RIA - Research and Innovation actionCoordinatore
35122 Padova
Italia