Project description
Preparing the grounds for a European digital Survivor Passport
Hundreds of thousands of childhood cancer patients in Europe continue to have unique health issues as they grow. Their long-term follow-up care is critical, due to increased morbidity and mortality. Unfortunately, treating healthcare professionals often lack access to their past medical data. The Survivorship Passport (SurPass) solution was designed to overcome this knowledge gap. In this context, the EU-funded PanCareSurPass project will scale up the SurPass and evaluate the implementation of a digital Survivor Passport in six European countries, taking into account various scenarios and issues. Work will result in a prediction model that will ease successful SurPass implementation across Europe.
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.
Fields of science
Programme(s)
Funding Scheme
RIA - Research and Innovation actionCoordinator
55131 Mainz
Germany
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Participants (18)
16147 Genova
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Participation ended
1090 Wien
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3000 Leuven
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23562 Lubeck
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LT-08661 Vilnius
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46026 Valencia
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40033 Casalecchio Di Reno Bo
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16121 Genova
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Legal entity other than a subcontractor which is affiliated or legally linked to a participant. The entity carries out work under the conditions laid down in the Grant Agreement, supplies goods or provides services for the action, but did not sign the Grant Agreement. A third party abides by the rules applicable to its related participant under the Grant Agreement with regard to eligibility of costs and control of expenditure.
16152 Genova
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1210 Wien
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1000 Bruxelles / Brussel
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1010 Wien
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3584CS Utrecht
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1401 AZ Bussum
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1200 Bruxelles / Brussel
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1018 RG Amsterdam
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A94 K542 Blackrock
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The organization defined itself as SME (small and medium-sized enterprise) at the time the Grant Agreement was signed.
1090 Wien
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