READI

Research in Europe and diversity inclusion

Summary

At present, many groups in Europe are not adequately represented in clinical research. These underserved and underrepresented populations may include ethnicities, LGBTQ+ individuals, older adults, and those from socioeconomically disadvantaged backgrounds, among others. This lack of representation has two major consequences. First, it leads to significant gaps in our understanding of various diseases and the most effective ways to prevent and treat them across different demographic groups. Second, it means that people from these communities miss out on access to experimental health technologies, such as new medicines, vaccines, and medical devices.

Improving inclusiveness and representation in clinical studies will lead to more equitable healthcare access, help address existing health disparities and enhance the quality of clinical research.

However, numerous systemic barriers hamper the greater involvement of underserved and underrepresented communities in clinical studies. These barriers include geographic limitations, mistrust, poor communication, and prejudice.

The aim of READI is to foster a more holistic, integrated system around clinical studies that will support the inclusion of patients usually underserved and underrepresented, and ultimately transform the way clinical studies are carried out in Europe. The project brings together experts from various fields, such as clinical studies, public health, multistakeholder collaboration, and patient engagement as well patient representatives themselves.

One of the project’s first tasks will be to understand and characterise, at a country level, underserved and underrepresented populations in Europe and generate strategies to boost their involvement in clinical studies. Additionally, the project will co-create new methodological approaches, resources, training programs, and tools to design and conduct inclusive clinical studies.

A key outcome of the project will be the development of an open, patient-centric digital platform for clinical studies. This innovative platform will bring together in one place resources, data, and information about clinical studies, driving the evolution of more inclusive clinical research. Finally, at least four clinical studies will be used to test the effectiveness of the tools and approaches developed.

Ultimately, READI will usher in a more inclusive approach to conducting clinical trials, benefiting underserved and underrepresented groups and enhancing the quality of clinical research in Europe.

Participants

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Universities, research organisations, public bodies, non-profit groups
  • Aarhus Universitet, Aarhus C, Denmark
  • Aarhus Universitetshospital, Aarhus, Denmark
  • Digestive Cancers Europe Dice, Brussels, Belgium
  • Ecrin European Clinical Research Infrastructure Network, Paris, France
  • Edex - Educational Excellence Corporation Limited, Nicosia, Cyprus
  • European University - Cyprus LTD, Nicosia, Cyprus
  • Fondazione PENTA - for the treatment and care of children with HIV-ONLUS, Padova, Italy
  • Fundacio Privada Per A La Recerca I La Docencia Sant Joan De Deu, Esplugues de Llobregat, Spain
  • Fundacion 29 De Febrero, Pozuelo De Alarcon Madrid, Spain
  • Fundacion Para El Fomento De La Investigacion Sanitaria Y Biomedica De La Comunitat Valenciana, Valencia, Spain
  • Fundatia Youth Cancer Europe, Cluj-Napoca, Romania
  • Global Heart Hub Company Limited By Guarantee, Galway, Ireland
  • Hl7 International Fondation, Brussels, Belgium
  • Klinikum Der Universitaet Zu Koeln, Cologne, Germany
  • Midtjyllands Eu Kontor Forening, Viborg, Denmark
  • Nacionalinis Vezio Institutas, Vilnius, Lithuania
  • National Institute For Health And Care Excellence, Manchester, United Kingdom
  • Pagalbos Onkologiniams Ligoniams Asociacija, Kaunas, Lithuania
  • Servicio Madrileno De Salud, Madrid, Spain
  • Stichting Eupati Foundation, Utrecht, Netherlands
  • Stichting Vu, Amsterdam, Netherlands
  • The University Court Of The University Of Aberdeen, Aberdeen, United Kingdom
  • Trial Nation, Copenhagen, Denmark
  • Universitair Medisch Centrum Utrecht, Utrecht, Netherlands
Small and medium-sized enterprises (SMEs) and mid-sized companies (<€500 m turnover)
  • Cdisc Europe Foundation Fondation, Brussels, Belgium
  • Curewiki, Brussels, Belgium
  • Esperity, Bruxelles / Brussel, Belgium
  • Fundacion Centro De Tecnologias De Interaccion Visual Y Comunicaciones Vicomtech, Donostia San Sebastian, Spain
  • Information Technology For Translational Medicine (Ittm) SA, Esch-sur-Alzette, Luxembourg
  • Shine 2europe Lda, Coimbra, Portugal
  • Socialit Software E Consulting SRL, Trento, Italy
  • Synapse Research Management Partners SL, Barcelona, Spain
  • Synergist Services, Bruxelles, Belgium
  • The Synergist, Bruxelles, Belgium
Patient organisations
  • European Aids Treatment Group Ev, Duesseldorf, Germany
  • Forum Des Patients Europeens, 1040, Belgium
  • Irish Platform For Patients' Organisations Science And Industry Limited By Guarantee, Dublin, Ireland
Third parties
  • Fundacio De Recerca Clinic Barcelona-Institut D Investigacions Biomediques August Pi I Sunyer, Barcelona, Spain
  • Fundacion Para La Investigacion Biomedica Del Hospital Universiatrio La Paz, Madrid, Spain
  • Fundacion Para La Investigacion Biomedica Del Hospital Universitario De Getafe, Madrid, Spain
  • Janssen-Cilag GMBH, Neuss, Germany
  • Janssen Biologics BV, Leiden, Netherlands
  • Janssen Pharmaceutica Nv, Beerse, Belgium
Private companies
  • Zabala Innovation Consulting SA, Mutilva Alta Navarra, Spain
IHI industry partners
  • Abbvie Inc, North Chicago, Illinois, United States
  • Ablynx Nv, Zwijnaarde, Belgium
  • Almirall SA, Barcelona, Spain
  • Astrazeneca AB, Södertälje, Sweden
  • Boehringer Ingelheim B.V., amsterdam, Netherlands
  • Boehringer Ingelheim Internationalgmbh, Ingelheim, Germany
  • Bristol-Myers Squibb Company Corp, Princeton, NJ, United States
  • Chiesi Farmaceutici S.A, Parma, Italy
  • Eli Lilly And Company, Indianapolis, United States
  • Eli Lilly And Company LTD, Basingstoke, United Kingdom
  • F. Hoffmann-La Roche AG, Basel, Switzerland
  • Glaxosmithkline Research & Development Limited, Brentford, Middlesex, United Kingdom
  • Janssen Cilag Limited, High Wycombe, United Kingdom
  • Lilly Deutschland GmbH, Bad Homburg, Germany
  • Novartis Pharma AG, Basel, Switzerland
  • Novo Nordisk A/S, Bagsvaerd, Denmark
  • Pfizer Inc, New York City, United States
  • Pfizer Polska Sp. z o.o., Warsaw, Poland
  • Pfizer R&D UK Limited, Sandwich, United Kingdom
  • Sanofi, Bridgewater, United States
  • Sanofi-Aventis Recherche & Developpement, Chilly Mazarin, France
  • Sanofi Medley Farmacêutica Ltda, São Paulo, Brazil
  • Sanofi Pasteur SA, Lyon, France
  • Sanofi Winthrop Industrie, Gentilly, France
  • Takeda Pharmaceuticals International AG, Glattpark-Opfikon (Zurich), Switzerland
  • UCB Biopharma, Brussels, Belgium
  • Viiv Healthcare Uk LTD, Brentford, United Kingdom
Contributing partners
  • Breakthrough T1d, New York, United States
  • Medicines And Healthcare Products Regulatory Agency, London, United Kingdom

Participants
NameEU funding in €
Aarhus Universitet156 280
Aarhus Universitetshospital530 200
Cdisc Europe Foundation Fondation362 450
Curewiki815 950
Digestive Cancers Europe Dice241 250
Ecrin European Clinical Research Infrastructure Network890 825
Esperity258 950
European Aids Treatment Group Ev581 950
European University - Cyprus LTD1 228 825
Fondazione PENTA - for the treatment and care of children with HIV-ONLUS854 500
Forum Des Patients Europeens627 200
Fundacio Privada Per A La Recerca I La Docencia Sant Joan De Deu258 950
Fundacion 29 De Febrero100 250
Fundacion Centro De Tecnologias De Interaccion Visual Y Comunicaciones Vicomtech973 930
Fundacion Para El Fomento De La Investigacion Sanitaria Y Biomedica De La Comunitat Valenciana564 700
Fundatia Youth Cancer Europe443 950
Global Heart Hub Company Limited By Guarantee345 200
Hl7 International Fondation362 450
Information Technology For Translational Medicine (Ittm) SA2 337 525
Irish Platform For Patients' Organisations Science And Industry Limited By Guarantee788 950
Klinikum Der Universitaet Zu Koeln1 340 950
Midtjyllands Eu Kontor Forening172 700
Nacionalinis Vezio Institutas155 450
Pagalbos Onkologiniams Ligoniams Asociacija547 450
Servicio Madrileno De Salud1 250 625
Shine 2europe Lda478 450
Socialit Software E Consulting SRL155 450
Stichting Eupati Foundation1 291 325
Stichting Vu747 550
Synapse Research Management Partners SL1 223 450
Synergist Services3 590 890
The Synergist978 910
Trial Nation362 450
Universitair Medisch Centrum Utrecht1 000 750
Zabala Innovation Consulting SA796 280
 
Third parties
NameFunding in €
Fundacio De Recerca Clinic Barcelona-Institut D Investigacions Biomediques August Pi I Sunyer51 750
Fundacion Para La Investigacion Biomedica Del Hospital Universiatrio La Paz4 027 385
Fundacion Para La Investigacion Biomedica Del Hospital Universitario De Getafe641 900
 
Total Cost31 538 000