PARADISE

Psychosocial fActors Relevant to BrAin DISorders in Europe

 Coordinatore LUDWIG-MAXIMILIANS-UNIVERSITAET MUENCHEN 

 Organization address address: GESCHWISTER SCHOLL PLATZ 1
city: MUENCHEN
postcode: 80539

contact info
Titolo: Dr.
Nome: Alarcos
Cognome: Cieza
Email: send email
Telefono: +49 89 2180 78216
Fax: +49 89 2180 78230

 Nazionalità Coordinatore Germany [DE]
 Sito del progetto http://www.paradiseproject.eu
 Totale costo 1˙675˙934 €
 EC contributo 1˙482˙092 €
 Programma FP7-HEALTH
Specific Programme "Cooperation": Health
 Code Call FP7-HEALTH-2009-single-stage
 Funding Scheme CSA-CA
 Anno di inizio 2010
 Periodo (anno-mese-giorno) 2010-01-01   -   2013-06-30

 Partecipanti

# participant  country  role  EC contrib. [€] 
1    LUDWIG-MAXIMILIANS-UNIVERSITAET MUENCHEN

 Organization address address: GESCHWISTER SCHOLL PLATZ 1
city: MUENCHEN
postcode: 80539

contact info
Titolo: Dr.
Nome: Alarcos
Cognome: Cieza
Email: send email
Telefono: +49 89 2180 78216
Fax: +49 89 2180 78230

DE (MUENCHEN) coordinator 243˙437.86
2    WORLD HEALTH ORGANIZATION.

 Organization address address: Avenue Appia 20
city: GENEVE
postcode: 1211

contact info
Titolo: Dr.
Nome: Somnath
Cognome: Chatterji
Email: send email
Telefono: +41 22 791 3202
Fax: +41 22 791 4328

CH (GENEVE) participant 255˙088.00
3    FONDAZIONE IRCCS ISTITUTO NEUROLOGICO CARLO BESTA

 Organization address address: VIA CELORIA 11
city: MILANO
postcode: 20133

contact info
Titolo: Prof.
Nome: Matilde
Cognome: Leonardi
Email: send email
Telefono: +39 02 23942511
Fax: +39 02 2363973

IT (MILANO) participant 215˙009.01
4    UNIVERSIDAD AUTONOMA DE MADRID

 Organization address address: CALLE EINSTEIN, CIUDAD UNIV CANTOBLANCO RECTORADO 3
city: MADRID
postcode: 28049

contact info
Titolo: Ms.
Nome: Ana
Cognome: Amigo
Email: send email
Telefono: +34 91 497 2897
Fax: +34 91 497 5503

ES (MADRID) participant 157˙290.00
5    Schweizer Paraplegiker-Forschung AG

 Organization address city: Nottwil
postcode: 6207

contact info
Titolo: Ms.
Nome: Mirjam
Cognome: Brach
Email: send email
Telefono: +41 41 9396560
Fax: +41 41 9396577

CH (Nottwil) participant 125˙618.00
6    CF CONSULTING FINANZIAMENTI UNIONE EUROPEA SRL

 Organization address address: Via Giuseppe Mussi 1
city: MILANO
postcode: 20154

contact info
Titolo: Ms.
Nome: Carla
Cognome: Finocchiaro
Email: send email
Telefono: +39 02 3108331
Fax: +39 02 33614064

IT (MILANO) participant 120˙347.82
7    INSTYTUT PSYCHIATRII I NEUROLOGII

 Organization address address: ULICA SOBIESKIEGO 9
city: WARSZAWA
postcode: 02 957

contact info
Titolo: Prof.
Nome: Marta
Cognome: Anczewska
Email: send email
Telefono: +48 22 4582 695
Fax: +48 22 651 93 01

PL (WARSZAWA) participant 110˙765.75
8    THE EUROPEAN BRAIN COUNCIL AISBL

 Organization address address: rue d'Egmont 11
city: BRUXELLES
postcode: 1000

contact info
Titolo: Dr.
Nome: Alastair
Cognome: Benbow
Email: send email
Telefono: +32 2 5132757
Fax: +32 2 513 64 11

BE (BRUXELLES) participant 87˙916.00
9    Nome Ente NON disponibile

 Organization address address: Paasivuorenkatu 2 A
city: Helsinki
postcode: 530

contact info
Titolo: Mr.
Nome: Raimo
Cognome: Viiansuo
Email: send email
Telefono: +358 9 6220 2928
Fax: +358 9 175 276

FI (Helsinki) participant 84˙744.00
10    UNIVERSITY OF EAST ANGLIA

 Organization address address: EARLHAM ROAD
city: NORWICH
postcode: NR4 7TJ

contact info
Titolo: Ms.
Nome: Tracy
Cognome: Moulton
Email: send email
Telefono: +44 1603 591482
Fax: +44 1603 591550

UK (NORWICH) participant 81˙875.56

Mappa


 Word cloud

Esplora la "nuvola delle parole (Word Cloud) per avere un'idea di massima del progetto.

representative    substance    difficulties    paradise    selected    life    protocol    difficulty    multiple    documentation    horizontal    parkinson    silos    treatment    epilepsy    quality    health    social    care    persons    literature    brain    psychosocial    eight    schizophrenia    sclerosis    disability    underestimated    epidemiology    disorders    people    evidence    disease    countries    dementia    groups    interventions    planning    migraine    actually    depression    stroke    data    ing    tool    disorder   

 Obiettivo del progetto (Objective)

'The overall prevalence of brain disorders – both neurological and psychiatric – is very high in Europe. Although it is well known that the burden and costs of these disorders are high, there is evidence that the overall, personal, social and economic costs of brain disorders have been underestimated because of the lack of valid and reliable information regarding the full range of psychosocial difficulties that actually shape the lived experience of persons with these disorders and affect their quality of life. Current European data on psychosocial difficulties are derived from the diagnostic criteria of each disorder and so take the form of narrow ‘information silos’ that are neither comprehensive nor comparable across disorders. Distinct information silos means that treatment planning, treatment evaluation and outcome assessment ignores commonalities of psychosocial consequences across disorders, undermining treatment efficiency and effectiveness, and ultimately increasing the costs of health and social care provision. The coordination action called PARADISE has the general objective of coordinating the development of a comprehensive and cross-cutting or ‘horizontal epidemiology’ of psychosocial difficulties associated with brain disorders. Since a horizontal epidemiology accounts for the psychosocial difficulties that are actually experienced by people with brain disorders, independently of the brain disorder associated with them, it concentrates on what is more relevant to the lives of people with brain disorders. This leads to more effective intervention planning and management, and therefore to improved quality of life along the continuum of care, in the community, and across the life span. PARADISE coordinates the existing expertise in partners from eight European countries in relation to research literature, data documentation and analysis strategies for a representative range of brain disorders. These disorders are dementia, depression, epilepsy, migraine, multiple sclerosis, Parkinson’s Disease, schizophrenia, stroke and substance use disorders. PARADISE will pave the way to future investigations that more meaningfully track the trajectories of psychosocial difficulties of brain disorders.'

Introduzione (Teaser)

New disability assessment for brain disorders

Descrizione progetto (Article)

Currently, the extent of psychosocial difficulties experienced by patients is vastly underestimated as pertinent data is lacking. To address this, the EC-funded 'Psychosocial factors relevant to brain disorders in Europe' (http://paradiseproject.eu/ (PARADISE)) project was initiated.

Composed of eight European countries, this consortium adopted a horizontal epidemiological approach to gather data on commonly experienced psychosocial difficulties across different brain disorders. Nine representative and heterogeneous brain conditions were selected for testing: dementia, depression, epilepsy, migraine, multiple sclerosis, Parkinson's disease, schizophrenia, stroke and substance dependency.

The researchers analysed systematic literature reviews, patient focus groups and interviews, feedback from clinical experts and 12 databases to identify commonly experienced psychosocial difficulties. The resulting data was used to draft a data collection tool called the Paradise Protocol. This tool is user-friendly with questions that are easily understood for accurate documentation of psychosocial difficulties.

To implement the PARADISE protocol, training courses were held for the interviewers at selected centres to produce harmonised data on brain disorders. This also aided the construction of a metric for measuring psychosocial difficulties though comparisons between persons and groups of persons with different brain disorders. The resulting Paradise-24 protocol contains psychosocial difficulty profiles, 11 determinants of psychosocial difficulty and a summary score.

The project outcomes were presented at a meeting to key stakeholders in brain disorder research and policy development and published in four peer-reviewed journals. Additionally, project members participated in over 60 national and international conferences.

The Paradise Protocol will provide scientific evidence to direct Europe's future strategy on mental health disorders through reliable and comparable disability information. Interventions will shift from the purely medical to include relevant health and social interventions. This should improve the quality of care provided to individuals with such disorders and considerable enhance their quality of life.

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