The International Consortium for Personalised Medicine is organising the workshop “ICPerMed Workshop: Preparing the future for Personalised Medicine (EP PerMed)” on January 17-18, 2023 (in person and virtually) in Pamplona, Navarra (Spain).

The main goals of the workshop will be in support of the European Partnership for Personalised Medicine (EP PerMed):

• To discuss with the different stakeholders the integration of the three main areas within the partnership relevant for realising the full potential of a personalised medicine (PM) approach (research, innovation, and implementation) that are described in the first version of the Strategic Research and Innovation Agenda (SRIA). Essential transversal aspects will be taken into account as the appropriate supporting framework including incentives, regulation, business models, regional and international perspectives, infrastructures and data access, patients, and citizens engagement;
• To allow a broad range of experts to give feedback and to contribute to the continued work of formulating and improving the SRIA of the future EP PerMed, identifying some key areas that could need further development;
• To present best practice examples of PM overcoming PM implementation barriers;
• To contribute to the EP PerMed SRIA and the planned proposal describing future activities and calls as well as appropriate tools and instruments.

There will be four Plenary Sessions on key areas of the SRIA:

1. The PM innovation system and industrial collaboration;
2. Patient and citizen engagement and education;
3. Health systems providers, payers/insurances and medical societies;
4. Regional and international perspectives of PM.

The participants will be stakeholders and experts in PM covering a brought range of expertise. Participation is on invitation only. Interested persons are welcome to contact the ICPerMed Secretariat.

On October 5-6 the International Consortium for Personalised Medicine (ICPerMed) hosted the hybrid conference entitled “ICPerMed Conference – Prelude to the Future of Medicine” in Paris. This event was organised by the ICPerMed Secretariat partner the French National Research Agency (ANR) and brought together about two hundred participants onsite and online from more than 30 countries.

To become a reality, personalised medicine needs to democratise and to transfer the results obtained in the laboratory into practice. To this end, ICPerMed aims to decipher obstacles and challenges faced for the implementation of personalised medicine and promote solutions facilitating it. ICPerMed tries to establish a common understanding on the cost-benefit value for the health system, to engage patients and citizen in their own health, to develop the use of health data and promote innovative ecosystems connecting research, technology and innovation and ensuring scientific breakthroughs can make it to the market. This implies to call on many fields such as data science, humanities and social sciences, health economics, public health or health regulations and to promote multi- and transdisciplinary approaches.

ICPerMed welcomed 4 keynote speakers focussing on the topic “Genome editing approaches and gene therapies are becoming a reality for the treatment of genetic diseases”:

The participants were pleased to discover the promises of single-cell technologies in personalised medicine thanks to Prof. Nikolaus Rajewsky from MDC Berlin. A focus on genome editing approaches and gene therapies becoming a reality for the treatment of genetic diseases have been also presented by Dr. Annarita Miccio from the Imagine Institute of genetic disease in Paris and Francesca Ferrua from the San Raffaele Hospital in Milan. Finally, Dr. Erik de Vrieze from Radboud University Medical Center in The Netherlands made us the honour to present an example of a recent RNA technology called antisense oligonucleotides.

Besides the key-note lectures the conference was structured around the following 5 sessions addressing crucial aspects for the successful implementation of personalised medicine:

• The adaptation of clinical trials to meet the specificities of personalised medicine;
• Personalised medicine and health economics – Can they be reconciled?;
• Implementation of health data space is accelerating;
• Understanding patient’s perspective in personalised healthcare;
• Personalised medicine requires an adequate innovative ecosystem.

Finally, for the first time in an ICPerMed conference, ICPerMed gave the floor to members of its Stakeholder Forum and was pleased to welcome three European infrastructures: ECRIN, EATRIS and EU-AMRI that are decentralised with national nodes of participating member states providing services and access to infrastructures to the research community.

To learn more about the content and outcomes of the conference, a conference summary and videos will soon be published on the ICPerMed website.

You can already find the presentations here.

On October 7, 2022 the ICPerMed Executive Committee met in Paris to exchange on the strategy and to plan future activities of the consortium. For those ExCom members who were not able to join in person a hybrid-option was offered. The meeting was kindly hosted by the ICPerMed Secretariat partner the French National Research Agency (ANR).

The main scope of this meeting was the alignment of the group on the future of ICPerMed in context with the upcoming Partnership for Personalised Medicine (EP PerMed). The participants were also informed about the ongoing preparations of the Drafting Group for the EP PerMed and discussed possible input by ICPerMed. In this context the upcoming ICPerMed Workshop “Preparing the future for Personalised Medicine (EP PerMed)” on January 17-18, 2023 in Pamplona, Spain will be aiming to support the development of the Strategic Research and Innovation Agenda for the EP PerMed. Further the Executive Committee exchanged on first ideas for an additional ICPerMed Workshop and for the second ICPerMed Family meeting, both planned in autumn 2023.

The next ICPerMed Executive Committee Meeting is planned for May 9-10, 2023 as an online event. 

The second ICPerMed Training entitled  “Personalised Medicine Research: Ethical and Legal Aspects of Biobanking and Data Management” took place virtually on October 10, 2022 with 130 international participants. The training was organised in collaboration with Dr Luca Sangiorgi (Director of the Department of Rare skeletal disorders at Istituto Ortopedico Rizzoli, IT).

The rationale behind the training organisation was to provide an extensive and all-embracing knowledge of the biobanking management.

The course aimed at educating health-care professionals and personnel dedicated to biomedical, technological and scientific research. It was held during one entire working day and dealt with the main issues concerning the establishment and management of a biobank of biological samples, the data associated with them, and the creation and launch of a Pathology Register, giving ample space for practical, organisational and scientific aspects.

The event was carried out through 7 lectures with the participation of external teachers, who are leading experts in the sector.

Read more …

In order to inform about successful approaches for Personalised Medicine, ICPerMed features Best Practice Examples on its website. Those are suggested by ICPerMed members and discussed and approved by the ICPerMed governance bodies, according to pre-defined evaluation criteria. Please find below the latest Best Practice Example:

The Ubiquitous Pharmacogenomics (U-PGx) Education Programme

Pharmacogenomics is the study of how genes affect a person's response to drugs and risk of side effects and enables a personalised choice and dosage of drugs. So far, this knowledge is not routinely applied in patient care. To improve this situation, a “serious game” was developed in the context of the European project U-PGx. It offers a more intuitive and practical training of medical students in recognizing adverse drug effects that may be caused by pharmacogenomics.

Read more…

European Partnerships (EP) are new instruments of the European Commission (EC) under the Horizon Europe framework programme, where national and regional funders join forces, strategies and budget in defined areas of action. So far, 49 EPs are foreseen in total and nine of these are in the Cluster “Health”. The European Partnership for Personalised Medicine, acronym: EP PerMed, is one of the proposed EPs and dedicated to personalised medicine (PM). Early this year, a draft proposal for the EP PerMed was already published by the EC.

Representatives of the Member States and Associated Countries to Horizon Europe met for the first time in-person on October 17-18, 2022 in Brussels to discuss about the upcoming partnership, the next steps to be taken in order to form the EP PerMed consortium and the SRIA development.

Strategic Research and Innovation Agenda (SRIA)

All European Partnerships have to develop a SRIA before their launch in order to ensure that their long-term vision is translated into concrete roadmaps with smart and measurable objectives. The EP PerMed Drafting Group currently identifies gaps, needs and challenges which should be addressed and overcome in the areas “research”, “innovation system” and “implementation” to foster Personalised Medicine for the benefit of patients and citizens. Information are gathered through different means from all related areas and sectors important for PM, i.e. focused expert interviews and analysis and consultation of strategic documents, both currently ongoing. A public online consultation is planned for November 2022 and a dedicated workshop in January 2023, the latter kindly supported by ICPerMed.

The next important steps in 2022 for the preparation of the EP PerMed are:

• SRIA Open Consultation, November 2022. ICPerMed will keep its newsletter subscribers updated about the launch of the open consultation.
• The finalisation of the first draft of the Personalised Medicine Strategic Research and Innovation Agenda (PM SRIA) end of 2022.
• The assembly of the EP PerMed consortium and the start of the EP PerMed proposal development, started in November 2022.
• The publication of the call for the co-funded European Partnership for Personalised Medicine end of 2022.

The EP PerMed proposal submission will take place in 2023 and the partnership is supposed to be launched by the end of 2023.

For any question around the EP PerMed, please contact the EP PerMed drafting group. Contact details: eppermed@dlr.de

In December 2021, ERA PerMed launched its fifth Call, JTC2022, with the support of 33 funding organisations from 26 countries on the topic “Prevention in Personalised Medicine”. The Joint Call Secretariat is hosted by the Agence Nationale de la Recherche (ANR) and this call was of great interest within the research community.

The aim of this call is to promote innovative interdisciplinary collaboration and to encourage translational research proposals on the topic of prevention in personalised medicine.

The overarching goal of the call is the development of tailor-made strategies for prevention of disease and disease progression, at three different levels:

1. Preventive measures decreasing the rate of incidence (primary prevention)
2. Early detection to increase the efficacy of a preventive therapy, even before symptoms are developed (secondary prevention)
3. Interventions preventing disease recurrence or improving patients’ care and quality of life (tertiary prevention).

Several new funding agencies joined ERA PerMed’s JTC2022: the South African Medical Research Council (SAMRC, South Africa), the Research Council of Lithuania (LMT, Lithuania), Sweden’s Innovation Agency (VINNOVA, Sweden) and the Ministry of Science and Technology (MOST, Taiwan). The joining of these funding agencies represents ERA PerMed’s strive to promote international standards and global collaboration in the field of personalised medicine.

In the JTC2022, 171 eligible pre-proposals, comprising of 894 participants, were submitted out of which 60 project consortia were invited to submit a full-proposal. The full-proposal final evaluation took place in September 2022 and coordinators are currently being informed about the results of the call through the Joint Call Secretariat (ANR).

In 2023, there will be no dedicated ERA PerMed call but ERA PerMed is highly supporting the preparation of the future European Partnership for Personalised Medicine, in which new Joint Transnational Calls will be launched to continue the great efforts performed by ERA PerMed to fund research projects in the personalised medicine field.

PERMIT: New resources from the PERMIT project

Although the PERMIT project finished at the end of June 2022, the efforts to disseminate and to facilitate the implementation of the PERMIT recommendations continue.

Two new scientific articles were published during the summer; one on the scoping review findings of the first year on translational methods for personalised medicine; and one on the recommendations for the use of machine learning for patient stratification. Two lay summaries were also made available on the project website, as well as a leaflet that summarises the recommendations that are most relevant for patient communities. The final touches are being put on three series of interactive online trainings that present the PERMIT process and recommendations. They are directed to all PerMed stakeholders, and include a series for experts, a series for non-expert stakeholders and a series in lay terms for patients and citizens. Furthermore, during the final quarter of 2022 the findings from the PERMIT project will be presented in different conferences and training events in Europe and abroad and additional resources will be made available on the project website.

SAPHIRe has come to an end: Final conference “Personalised Medicine in European Regions - A Roadmap to the Future of Medicine”

The SAPHIRe consortium has been coming to an end in 2022 and had its final conference entitled “Personalised Medicine in European Regions—A Roadmap to the Future of Medicine” in the Flemish Parliament in Brussels on April 25-26, 2022.

SAPHIRe, which stands for Securing the Adoption of Personalised Health in Regions, is a project initiated to support the development and implementation of personalised medicine in European regions, including in remote and sparsely populated regions, and to establish and support networking between regions. The project was running from December 1, 2018 until May 31, 2022.

SAPHIRe had the honour to have the Flemish Minister of Economy and Innovation opening its final event which featured speakers from all over the quadruple helix (university, industry, policy, citizens). The European Commission was present in the name of Szymon Bielecki (DG Connect) who presented the 1 + Million Genomes Initiative and Jean-Luc Sanne (DG RTD) who presented the role of European regions in PM in Horizon Europe. Lessons learned during the project were highlighted. The modular roadmap, the observatory (a dynamic online tool for regional policymakers, funders and other key stakeholders to share relevant information) and the complete regional report were presented to provide insight and inspiration into how regions contribute to the development and implementation of personalised medicine with the example of Northern Ireland. Koen Kas explained his vision of the future of healthcare. Our sister CSA’s Regions4PerMed & HEcoPerMed as well as ICPerMed and the Vanguard Initiative presented their latest findings and vision. We also had two interesting panel discussions. 150 people attended the event which was also available via livestreaming.

The video presentations of the conference can be found here.

After the final event a Vanguard Initiative Smart Health meeting was organised back-to-back to promote and allow interregional collaborations.

After two years of online meetings, webinars and teleworking, this event was an opportunity to meet each other in person again and offered a chance to engage in interregional networking.

SAPHIRe created awareness of the importance of the regions, the complexity of the organisation of the different competences related to PM in EU and on preventive personalised medicine. SAPHIRe has come to an end, but the work to implement PM in the European regions for each European citizen is far from finished.

The SAPHIRe website will still be available for the next 2 years.

Sino-EU PerMed: Update and Announcements

Save-The-Date for the 2nd Sino-EU Permed Science & Technology Webinar “Perspectives in Personalised Medicine: Cancer treatment & diagnostics”

The Science & Technology Webinar is planned for December 13, 2022 08:00 – 12:00 CEST. Registration and Details are available on the Sino-EU PerMed Website and on social media.

Research in genetic links in cancer diseases and diagnoses triggered the start of personalised medicine more than 10 years ago. The area has today developed significantly, and we are starting to see the first national cancer plans being implemented into health care. At this webinar examples from both China and Europe will be presented, demonstrating the state of the art of the field today.

Successful Start - 1^st Sino-EU Permed Science & Technology Webinar on Perspectives in Personalised Medicine: genomics, rare diseases, devices

On September 13 the Sino-EU PerMed Project hold its first webinar on Science and Technology in Personalised Medicine in Europe and China.

Examples from three areas of key importance for personalised medicine were presented at the webinar: genomics, rare disease, and devices. Within each area presentations from China and EU were given. In total four European and four Chinese scientists presented their work. The official welcome was done by Research and Innovation Counselor Fuxiang He from the Embassy of the People's Republic of China in Denmark and by Alexandru Costescu from R&I Health unit at the European Commission.

In conclusion, participants discussed the three most important challenges right now in the further development and implementation of personalised medicine and agreement on the following:

• Getting access to biomedical and health care data, both nationally and internationally
• Identify the right patient cohorts
• In-depth phenotyping of patient cohorts

A total of 81 participants had registered their participation. This event was the first of three planned science & technology webinars.

The next webinar is planned to take place on December 13, 2022 as indicated above.

EU-Africa PerMed – First regional workshop, E&T activities and SAMRC joins ICPerMed!

A first (on-site) regional workshop organised by EU-Africa PerMed took place on 13-14 July (Nairobi, Kenia). Around 70 participants (health systems policy makers, researchers, funding agencies, scientific societies, regional technology developers and international organisations) joined to discuss and identify regional specific Personalised Medicine needs as well as the current status and the potential for collaboration between African sub-regions and Europe. This workshop was the first of a series of regional workshops (North, West/Central and South Africa) organised by the project. The outcome of all regional meetings will be discussed in the next Stakeholder Workshop in February 2023, in Cape Town, South Africa.

Please find more detailed information about the regional workshop in the press release.

We are pleased to announce that the South African Medical Research Council (SAMRC) recently joined the ICPerMed consortium as first African country representative! More information can be found here.

Stay tuned! Our next training events:

1. ONLINE: Webinar on Experiences, Opportunities, and Challenges of Implementing Personalised Medicine in Africa from the perspective of practitioners, November 23, 2022, 14:00 pm (CET)
   High level expert participation: Yaw Bediako (Co-Founder and CEO, Yemaachi Biotech); Julie Makani (Department of Haematology and Blood Transfusion at Muhimbili University of Health and Allied Sciences) and Godfrey Sama Philipo (Research and Patient Outcome Coordinator RCSI/COSECSA Collaboration Programme)
   Registration: https://us02web.zoom.us/webinar/register/WN_lOS_h2IwSF20aTokXKxybw
2. IN-PERSON: Summer School on Clinical studies in Personalised Medicine, South Africa (around February 20-24, 2023).

More information will be available on the EU-Africa PerMed website.

Learn more about EU-Africa PerMed! Two project videos are published:

Follow EU-Africa PerMed: https://www.euafrica-permed.eu/contact/; Twitter ‎@EU_AfricaPerMed and LinkedIn @ EU-AFRICA PerMed Project. Join EU-Africa PerMeds public discussions: https://www.linkedin.com/groups/14014720/.