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PanCare studies of the scale-up and implementation of the digital Survivorship Passport to improve people-centred care for childhood cancer survivors

Objective

Almost 500,000 former childhood cancer patients (CCS) are now living in Europe. Compared to the general population, CCS represent a vulnerable population as they are at an increased risk of developing health problems, known as late effects, resulting in excess morbidity and mortality. Many survivors are unaware of their personal risk for specific late effects, which reduces their ability to manage their own follow-up care. Similarly, their treating healthcare professionals (HCPs) lack information about care required for CCS and access to treatment data from their childhood cancer. The Survivorship Passport (SurPass) is an innovative, digital tool, developed in previous EU-funded projects, that can be used to overcome these knowledge gaps to improve people-centred long-term survivorship care. Importantly, end users (CCS, HCPs) are integral to the research, represented by three key stakeholder networks (PanCare, SIOP Europe, CCI Europe).

PanCareSurPass will conduct a robust assessment of the implementation of the SurPass by first conducting a pre-implementation study in six countries (Austria, Belgium, Germany, Italy, Lithuania, Spain) representing three infrastructural scenarios in Europe. Ethical, structural, organisational, economical, national, local, privacy issues, health systems, and particular national circumstances will be taken into account throughout. An Implementation Strategy will be developed and the SurPass will be updated and validated before use in an implementation study in the six countries. The study will look at a range of outcomes including CCS activation and empowerment, CCS/HCP satisfaction with the tool, feasibility and health economics. Based on the results of the study, a Prediction Model will be developed to promote and support future implementation of the SurPass across Europe.

Call for proposal

H2020-SC1-2020-Two-Stage-RTD
See other projects for this call

Funding Scheme

RIA - Research and Innovation action

Coordinator

UNIVERSITAETSMEDIZIN DER JOHANNES GUTENBERG-UNIVERSITAET MAINZ
Address
Langenbeckstrasse 1
55131 Mainz
Germany
Activity type
Higher or Secondary Education Establishments
EU contribution
€ 550 102,50

Participants (16)

ISTITUTO GIANNINA GASLINI
Italy
EU contribution
€ 490 000
Address
Via Gerolamo Gaslini 5
16147 Genova
Activity type
Public bodies (excluding Research Organisations and Secondary or Higher Education Establishments)
ST ANNA KINDERKREBSFORSCHUNG VEREIN
Austria
EU contribution
€ 410 000
Address
Zimmermannplatz 10
1090 Wien
Activity type
Research Organisations
KATHOLIEKE UNIVERSITEIT LEUVEN
Belgium
EU contribution
€ 255 000
Address
Oude Markt 13
3000 Leuven
Activity type
Higher or Secondary Education Establishments
UNIVERSITAET zu LUEBECK
Germany
EU contribution
€ 237 500
Address
Ratzeburger Allee 160
23562 Lubeck
Activity type
Higher or Secondary Education Establishments
VIESOJI ISTAIGA VILNIAUS UNIVERSITETO LIGONINE SANTAROS KLINIKOS
Lithuania
EU contribution
€ 242 606,25
Address
Santariskiu G 2
08661 Vilnius
Activity type
Public bodies (excluding Research Organisations and Secondary or Higher Education Establishments)
FUNDACION PARA LA INVESTIGACION DEL HOSPITAL UNIVERSITARIO LA FE DE LA COMUNIDAD VALENCIANA
Spain
EU contribution
€ 270 625
Address
Av Fernando Abril Martorell 106
46026 Valencia
Activity type
Research Organisations
CINECA CONSORZIO INTERUNIVERSITARIO
Italy
EU contribution
€ 278 125
Address
Via Magnanelli 6/3
40033 Casalecchio Di Reno Bo
Activity type
Research Organisations
AZIENDA LIGURE SANITARIA DELLA REGIONE LIGURIA
Italy
EU contribution
€ 54 841,25
Address
Piazza Della Vittoria 15
16121 Genova
Activity type
Public bodies (excluding Research Organisations and Secondary or Higher Education Establishments)
AIT AUSTRIAN INSTITUTE OF TECHNOLOGY GMBH
Austria
EU contribution
€ 65 000
Address
Giefinggasse 4
1210 Wien
Activity type
Research Organisations
HL7 INTERNATIONAL FONDATION
Belgium
EU contribution
€ 346 875
Address
Square De Meeus 38-40
1000 Brussels
Activity type
Research Organisations
GESUNDHEIT OSTERREICH GMBH
Austria
EU contribution
€ 206 500
Address
Stubenring 6
1010 Wien
Activity type
Other
PRINSES MAXIMA CENTRUM VOOR KINDERONCOLOGIE BV
Netherlands
EU contribution
€ 200 375
Address
Heidelberglaan 25
3584CS Utrecht
Activity type
Other
PANCARE
Netherlands
EU contribution
€ 76 625
Address
Jacobus Bellamylaan 16
1401 AZ Bussum
Activity type
Other
SIOP EUROPE ASBL
Belgium
EU contribution
€ 55 312,50
Address
Avenue E Mounier 83
1200 Bruxelles
Activity type
Other
CHILDHOOD CANCER INTERNATIONAL
Netherlands
EU contribution
€ 62 125
Address
Kraijenhoffstraat 137 A
1018 RG Amsterdam
Activity type
Other
PINTAIL LTD
Ireland
EU contribution
€ 198 387,50
Address
Springhill Avenue 77
A94 K542 Blackrock
Activity type
Private for-profit entities (excluding Higher or Secondary Education Establishments)