
EUROPEAN PATIENTS FORUM
EUROPEAN PATIENTS FORUM
25 Projects, page 1 of 5
Open Access Mandate for Publications assignment_turned_in Project2019 - 2021Partners:ERRIN, EUROPEAN PATIENTS FORUM (EPF), EuroRec, SPMS, EHTEL +14 partnersERRIN,EUROPEAN PATIENTS FORUM (EPF),EuroRec,SPMS,EHTEL,EUROPEAN PATIENTS FORUM,Funka Nu,COCIR,EAPM,EMPIRICA,THE LISBON COUNCIL,Open Evidence,ECHALLIANCE COMPANY LIMITED BY GUARANTEE,IFIC,INCE,FZJ,AGE Platform Europe,European Alliance for Personalised Medicine,EIP ON AHA REFERENCE SITES COLLABORATIVE NETWORKFunder: European Commission Project Code: 826353Overall Budget: 3,999,990 EURFunder Contribution: 3,999,990 EURDigitalHealthEurope will provide comprehensive, centralised support to the digital transformation of health and care (DTHC) priorities of the Digital Single Market. The partners bring a broad range of collective knowledge and expertise, originating from the longstanding leadership and engagement in the whole spectrum of activities, from interoperability and standards to health service innovation and from the technical to the policy level. The project will support large-scale deployment of digital solutions for person-centred integrated care by identifying, analysing, and facilitating the replication of highly impactful best practices, utilising the consortium’s exceptional expertise on knowledge management and impact assessment (EIP on AHA repository of innovative practices, MAFEIP), twinning schemes, and mobilisation of stakeholders. A marketplace will enable organisations to find suitable partnerships. At least 46 twinnings ranging from adaptation of impactful best practices to full adoption will be carried out. A funding advice service and capacity building framework will be provided to further stimulate deployment and scale up. Building on the unique composition of the consortium, the project will establish and manage 3 collaboration platforms to align all efforts of ongoing and future initiatives supporting the 3 DTHC priorities. The partners will utilise their vast network of more than 1,100 members representing national, regional, and EU-wide stakeholders. The collaborative work will lead to common strategic agendas and commitments for action that will boost innovation and progress in the respective topics. A Board of Associated Experts with proven high-level competence on all key fields will support the delivery of an actionable strategic vision and recommendations for EU policy beyond 2020.
more_vert Open Access Mandate for Publications and Research data assignment_turned_in Project2025 - 2029Partners:University of Bristol, SERGAS, AP-HP, INSERM, EUROPEAN PATIENTS FORUM +19 partnersUniversity of Bristol,SERGAS,AP-HP,INSERM,EUROPEAN PATIENTS FORUM,UCD,Lancaster University,ULB,University of Verona,UCG,nile,BIM,NWO-I,UCL,Oslo University Hospital,Collectif No Fakemed,CNRS,Inserm Transfert,ECRIN,INSERM,HCL,UAntwerpen,LES MARKABIENS,Medical University of ViennaFunder: European Commission Project Code: 101156304Funder Contribution: 17,042,200 EURRecent pandemics showed Europe how serious health threats can be to society. Proactive approaches are needed to ensure that medical countermeasures are available during pandemics. PROACT EU-Response’s overarching objective is to prepare Europe for future pandemics by strengthening upon existing networks of experts and civil society focused on clinical therapeutic platform trials within hospital inpatient settings across Europe. In case of an outbreak, this network will provide capacity to pivot rapidly to implement large, multi-country platform trials studying therapeutics and diagnostic-tool performance. Underpinned by strong community involvement and further strengthened by the inclusion of social and implementation scientists, PROACT EU-Response centres on six objectives: expand a solid network of clinical centres across Europe that will implement a clinical trial assessing a syndromic approach for respiratory viral infections; strengthen a laboratory network to identify pathogens and biomarkers of disease monitoring for routine surveillance; support a network of methodologists and trialists who will ensure the trials’ logistical and methodological aspects; initiate a network of professionals to work on preparedness tools to ensure a smooth pivot from inter-pandemic to the pandemic period in case of an outbreak; build a network of social science researchers who will provide nuanced understanding of the social contexts; and establish a community group to work on activities that will empower patients and citizens in Europe regarding their own health and educate them about science and health issues. By bringing together scientists, social science researchers, and civil society members, PROACT EU-Response will benefit the entire European population and beyond through decreased mortality and morbidity associated with emerging diseases, lower societal economic costs of morbidity, strengthened research and innovation expertise, human capacities, and know-how for combatting communicable diseases.
more_vert Open Access Mandate for Publications assignment_turned_in Project2016 - 2022Partners:UMC, ERASMUS MC, AstraZeneca (Sweden), ACTELION PHARMACEUTICALS LTD, YAMANOUCHI EUROPE BROCADES PHARMA +33 partnersUMC,ERASMUS MC,AstraZeneca (Sweden),ACTELION PHARMACEUTICALS LTD,YAMANOUCHI EUROPE BROCADES PHARMA,MSD,AMGEN LIMITED,TAK,FEDERAAL KENNISCENTRUM VOOR DE GEZONDHEIDSZORG FODERALES EXPERTISEZENTRUM DES GESUNDHEIT,Newcastle University,EUROPEAN PATIENTS FORUM,CSL BEHRING GMBH,Janssen (Belgium),Uppsala University,AbbVie,NOVARTIS,Bayer Pharma AG,Roche (Switzerland),IAPO,MINDBYTES,SARD,Johnson & Johnson (United States),MUSCULAR DYSTROPHY GROUP OF GREAT BRITAIN AND NORTHERN IRELAND,IEO,University of Birmingham,COLLABORATE PROJECT MANAGEMENT UG HAFTUNGSBESCHRANKT,IRCCS-BARI,Universitätsklinikum Erlangen,KUL,PFIZER,EUR,Bayer AG,IRCCS,TAKEDA,MERCK KOMMANDITGESELLSCHAFT AUF AKTIEN,EUROPEAN PATIENTS FORUM (EPF),ECPC,Eli Lilly and Company LimitedFunder: European Commission Project Code: 115966Overall Budget: 12,015,500 EURFunder Contribution: 6,000,000 EURThe PREFER project will deliver an overview and evaluation of preference elicitation methods to be applied in the entire drug life cycle, i.e. in the early stages of identifying medical needs, in clinical testing, to guide decisions on reimbursement and to make decisions on withdrawal of drugs from the market. A broad array of (combinations of) patient preference methods will be tested prospectively in a large number of case studies. The availability of large patient cohorts will enable to test new methods or deviations from existing methods in a randomized manner, by comparing well-known methods with newer ones. The use of simulation studies will both contribute to smarter design of case studies and to exploring the sensitivity of outcomes of preference studies. Based on discussions with a broad representation of stakeholders e.g. patients, patient organisations, regulatory authorities, HTA bodies and reimbursement agencies, suitable methods will be tested and their contributions to improved decision making will be discussed in recommendations adapted to the needs of all relevant stakeholders. The recommendations from PREFER are expected to lead to changed practices, in that industry will routinely assess whether a preference study would add value at key decision points in the medicinal product life cycle and, if so, implement patient-preference elicitation studies according to the PREFER project recommendations. The PREFER consortium consist of 16 industry partners and 16 academic and SME members including representation from academia, patient organizations, HTA bodies, reimbursement agencies, and project management.
more_vert Open Access Mandate for Publications and Research data assignment_turned_in Project2020 - 2023Partners:Uppsala University, RSU, MEFZG, INFARMED, Palacký University, Olomouc +18 partnersUppsala University,RSU,MEFZG,INFARMED,Palacký University, Olomouc,Sofia University,FUNDACIO CECOT INNOV,VHIR,ISS,SERGAS,EUROPEAN PATIENTS FORUM,KLINIKUM RECHTS DER ISAR DER TECHNISCHEN UNIVERSITAT MUNCHEN,UiO,Trinity College Dublin, Ireland,EUROPEAN PATIENTS FORUM (EPF),CEA,STICHTING RADBOUD UNIVERSITEIT,UEF,UH,EATRIS,UL,Luxembourg Institute of Health,RADBOUDUMCFunder: European Commission Project Code: 871096Overall Budget: 4,999,020 EURFunder Contribution: 4,999,020 EURIn the first five years of operations, EATRIS has shown strong proof of concept of the value of the services portfolio, with users ranging from academia, SMEs, large pharma, to biotech and research funding organisations. The overarching aim of EATRIS-Plus is to support the long-term sustainability (LTS) of EATRIS by delivering innovative scientific tools to the research community, strengthening the infrastructure’s financial model and reinforcing EATRIS leadership in the European Research Area (ERA), particularly in the field of Personalised Medicine (PM) research and development. Specific objectives are: (i) To consolidate EATRIS capacities in the field of PM to better serve academia and industry and augment the number of EATRIS Innovation Hubs with large pharma; (ii) To further strengthen the LTS of EATRIS financial model; (iii) To drive patient empowerment through active involvement in the infrastructure’s operations; (iv) To expand strategic partnerships with Research Infrastructures and other relevant stakeholders. The proposal relies on a scientific and technological programme combined with capacity-building activities across 16 EU countries, with the support of two umbrella organisations representing patient organisations and SMEs. EATRIS-Plus will help pooling and exploiting the translational academic capacities of the infrastructure in omic technologies to enable researchers to better address the scientific and societal challenge of PM. Additionally, the coordination office and 13 existing national nodes of the infrastructure will participate in implementing joint outreach, training, industry engagement and international collaboration activities to further build national capacity, increase users’ trust and strengthen EATRIS and the ERA global scientific leadership.
more_vert Open Access Mandate for Publications and Research data assignment_turned_in Project2025 - 2030Partners:IPPOSI, UCB, MHRA, TRIAL NATION, THE SYNERGIST +50 partnersIPPOSI,UCB,MHRA,TRIAL NATION,THE SYNERGIST,BMS,INFORMATION TECHNOLOGY FOR TRANSLATIONAL MEDICINE (ITTM) SA,FISABIO,Novo Nordisk,EDEX,AUH,Eli Lilly (United States),CHIESI,STICHTING EUPATI FOUNDATION,AbbVie,GLAXOSMITHKLINE RESEARCH AND DEVELOPMENT LTD.,SARD,PFIZER INC,TAK,NATIONAL CANCER INSTITUTE,AMGEN,ESPERITY,CENTRAL DENMARK EU OFFICE CDEU,UMC,SERGAS,Zabala Innovation Consulting (Spain),BIF,FONDAZIONE PENTA-FOR THE TREATMENT AND CARE OF CHILDREN WITH HIV-ONLUS,EUROPEAN PATIENTS FORUM,PAGALBOS ONKOLOGINIAMS LIGONIAMS ASOCIACIJA,ECRIN,AU,VU,CDISC,JDRF,HL7 INTERNATIONAL,SYNERGIST SERVICES,Almirall (Spain),KLINIKUM DER UNIVERSITAET ZU KOELN,FSJD-CERCA,FUNDATIA YOUTH CANCER EUROPE,FOUNDATION 29,SHINE 2EUROPE LDA,EUC,Curewiki,VICOM,AstraZeneca (Sweden),EATG,JANSSEN CILAG LIMITED,SYNAPSE RESEARCH MANAGEMENT PARTNERS SL,DiCE,GLOBAL HEART HUB COMPANY LIMITED BY GUARANTEE,NOVARTIS,Social IT,Roche (Switzerland)Funder: European Commission Project Code: 101166227Overall Budget: 66,860,900 EURFunder Contribution: 31,538,000 EURThe public-private partnership, READI, seeks to help clinical studies (CS) to finally serve the complete general population, and therefore more patients. To date CS have struggled to recruit and retain participants from diverse backgrounds and communities, such as marginalized or disadvantaged groups (e.g., sexual, gender, age, cultural, and socioeconomic cohorts). The resulting knowledge gaps entrench or increase health disparities. The READI consortium strives to tackle these challenges by fostering a more cohesive and integrated CS ecosystem for underserved (US) and underrepresented (UR) communities. It will actively connect all key stakeholders who can facilitate access to a wide range of patient populations. It will provide these stakeholders with the necessary tools, training programs, and approaches essential for the recruitment and retention of US/UR patients in CS. In addition, it will design, build and implement a digital platform which is patient-centred, sustainable, open and innovative. This will foster improved access to CS information and READI tools, while also supporting patient connections with the created communities. Finally, at least 4 CS will be used for testing the effectiveness of the developed tools and approaches. READI has a three-fold objective: to help US/UR communities overcome CS participation barriers (e.g., lack of information/awareness, mistrust, poor communication, geographic limitations, prejudice), which in turn will improve research of many diseases and conditions, preventative care and treatment effectiveness in different demographic groups, and better serve society. READI’s success will draw from its interdisciplinary, multi-stakeholder, consortium composition of 73 organizations from 18 countries, with key expertise in drug development and CS (design and operations), engagement strategies for US/UR populations, digital platform development, training and capability building initiatives, effective communication and dissemination, long-term sustainability, ethics and regulatory affairs.
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