ICPerMed provides a platform to initiate, coordinate and support communication and exchange on Personalised Medicine research, funding and implementation on a European and international level.

The major communication instruments are the ICPerMed website and the ICPerMed newsletter, with the recently installed four editions per year. Furthermore, to be in close and constant exchange with the ICPerMed stakeholder community and the different Personalised Medicine key players, ICPerMed started in 2020 its Twitter account @ICPerMed and is now also on LinkedIn:

Follow us! @ICPerMed - The International Consortium for Personalised Medicine.

The “ICPerMed Family Meeting – Joining Forces” took place virtually on 9-10 November 2021. Approximately 75 invited participants followed the meeting actively. The aim of this first “ICPerMed Family” meeting was to foster collaboration between members of ICPerMed, ERA PerMed and the ICPerMed-related Coordination and Support Actions (CSAs) funded by the European Union, and to collect input on future research and implementation approaches. Five sessions around the following topics were organised by the ICPerMed working groups in cooperation with the CSAs:

• Clinical PM Research & Technology – Achievements, Challenges and Outlook
• Health systems and Personalised Medicine implementation – Identification of research and implementation supporting requirements
• The relevance of regions for implementing personalised medicine
• Education and Literary – Identification of future activities to empower health care providers, patients and citizens
• Internationalisation of ICPerMed activities – Facilitators and hurdles

The interactive session format with impulse talks followed by discussions in smaller breakout-rooms or panel discussions opened a forum for exchange on the above-mentioned topics. Besides the ICPerMed Executive Committee members, partners of ERA PerMed and of the ICPerMed-related CSAs as well as ICPerMed Advisory Board members, ICPerMed Working Group experts and specifically invited representatives of related initiatives brought in their diverse expertise in the field of Personalised Medicine.

A report summarizing the results of the Family Meeting will shortly be presented on the ICPerMed website.

On 29-30 November 2021, the ICPerMed Executive Committee met virtually to discuss and plan strategy and future activities of the consortium.

At the meeting, the Executive Committee discussed future events of ICPerMed, such as the ICPerMed Workshop “Personalised Medicine: How to ensure value-based implementation” (presumably in June 2022) and the next ICPerMed Conference (planned for autumn 2022). Information was shared about further upcoming activities, like the Recognition 2021 on “Implementation in Personalised Medicine Research”, which was launched during the meeting, and the planned ICPerMed Trainings. Further, the experts of the newly established Advisory Board were welcomed and introduced themselves.

A broadly discussed topic was ICPerMed’s future strategic activities including on the one hand the support for the preparation of the European Partnership for Personalised Medicine (EP PerMed) and on the other hand ideas for the future of ICPerMed.

The next ICPerMed Executive Committee Meeting will take place on 10-11 May 2022.

ICPerMed launched its fourth “Best Practice in Personalised Medicine” Recognition 2021. The objective of this recognition is to honour, encourage, promote and disseminate outstanding best practice examples focusing on the implementation of personalised medicine. The deadline for proposal submission will be 28 January 2022.

Responsible authors (applicants from any country) of candidate proposals published and developed between 1 November 2019 and 31 December 2020 are eligible to apply.

The successful applicants will be invited to the next ICPerMed event and will be given the opportunity to present their results during a plenary session. In addition, they will receive a non-cash support for the dissemination of the best practice example by the ICPerMed Secretariat in the value of 500 €. More information on the Recognition and the application process is available here on the ICPerMed website.

For further questions please contact healthresearch@sanita.it

The ICPerMed Working Groups consist of ICPerMed members and external experts and support ICPerMed activities. They work on topics prioritised by ICPerMed, (co-)organise events and develop strategic documents. There are currently five Working Groups addressing five dedicated topics which are outlined in the leaflets published on the website:

• Clinical Studies in Personalised Medicine
• Personalised Medicine in healthcare
• Patients’ empowerment
• Education & Curricula in Personalised Medicine
• Health economic value of Personalised Medicine

More and more successful approaches for Personalised Medicine are coming up in recent years. To inform about those, 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.

On 26 November 2021 the latest Best Practice Example “The Portuguese Familial Hypercholesterimia Study” was published on the ICPerMed website. The Portuguese FH study investigates patients for gene variants causing this rare inherited lipid metabolism disorder. This genetic analysis allows diagnosis early in childhood and can predict the severity of disease. Preventive treatment can be tailored to the characteristics of each patient, which dramatically reduces the risk for cardiovascular disease while keeping side effects to a minimum.

More information can be found here.

Within the European Union’s 9th Framework Programme for Research and Innovation, Horizon Europe, the set-up of a European Partnership for Personalised Medicine – EP PerMed, is proposed. It aims to align and promote national and regional priority setting and funding for research and implementation projects in the area of Personalised Medicine.

In 2020, in support of and for promoting the partnership, ICPerMed together with ERA PerMed, developed jointly a draft concept paper and organised an information day in May this year to propose and share their vision for an EP PerMed, its objectives, its activities and its expected impacts.

The draft concept paper was presented as input for reflections during the first European Member States (MS) consultation meeting on 28 September 2021. The interest of the MS in participating in the EP PerMed is high, considering that there was nearly a full coverage of representations of all European countries during the meeting.

One outcome of the meeting was the establishment of the EP PerMed drafting group, comprising representatives from nine different countries: Austria, Belgium, Denmark, Germany, France, Italy, Poland, Portugal and Sweden. The drafting group developed and submitted on behalf of the participating MS a first concept of the EP PerMed to the European Commission (EC) for an official feedback.

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

• A first budget request by the EC to all MS of their designated contribution to EP PerMed, early in 2022.
• The development of a Strategic Research and Innovation Agenda (SRIA), in the course of 2022.
• The publication of the call for a co-funded European Partnership for Personalised Medicine by the EC, planned for 2022.

The final proposal submission is expected in 2023. The EP PerMed is supposed to start by the end of 2023 with a proposed running time of seven years until 2030.

To support the EP PerMed preparations, setting up national hubs would be a suitable tool particularly to pool all resources and expertise in one country and to identify the national/regional needs.

The main contact person for the EP PerMed drafting group and preparations around the EP PerMed is Wolfgang Ballensiefen (DLR, Germany), supported by Monika Frenzel (ANR, France).

For any question around the EP PerMed, please contact eppermed@dlr.de.

Results of the fourth ERA PerMed Joint Transnational Call (JTC2021):
The fourth ERA PerMed Joint Transnational Call (JTC2021) for research projects in Personalised Medicine) is supported by 31 funding organisations from 23 countries on the topic “Multidisciplinary research projects on Personalised Medicine: Development of clinical support tools for Personalised Medicine implementation”.

This call was launched in December 2020 with the Italian Ministry of Health (It-MoH) as Joint Call Secretariat and was of great interest within the research community: 204 eligible pre-proposals were submitted under the JTC2021 and 59 consortia were invited to submit a full-proposal after a first evaluation. After taking into account the recommendations of the Peer Review Panel and the available budget for this call, 22 research projects will receive funding for three years with a total funding volume of approximately 27 Mio €.

Launch of the fifth ERA PerMed Joint Transnational Call (JTC2022):
The fifth ERA PerMed Joint Transnational Call (JTC2022) on “Prevention in Personalised Medicine” was launched on 1 December 2021 with the French National Research Agency (ANR) acting as the Joint Call Secretariat (JCS), with the support of the Spanish National Health Institute Carlos III (ISCIII). The submission deadline for pre-proposals will be 17 February 2022.

To align national research strategies, promote excellence, reinforce the competitiveness of European players in Personalised Medicine (PM), and enhance the European collaboration with non-EU countries, 33 funding organisations have agreed to launch the fifth joint transnational call for collaborative innovative research projects in Personalised Medicine (PM). The funding organisations participating in this call particularly wish to promote innovative interdisciplinary collaboration and to encourage translational research proposals. The available budget for this call is 29 Mio € (approx.).

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), and 3. interventions preventing disease recurrence or improving patients’ care and quality of life (tertiary prevention).

The JCS 2022 organizes an information and networking event on the JTC2022 “Prevention in Personalised Medicine” on the 9th December. The agenda of the event and registration are available here.

Further information on the JTC2022 can be found in the announcement.

For further information on ERA PerMed, please refer to the ERA PerMed website.

EU-Africa PerMed – Results of the scientific and policy mapping available

The CSA EU-Africa PerMed launched its activities on 1st of February 2021, and is sharing the outcome of the first project activities concerning the Scientific and Policy Mapping. The mapping aimed to gain knowledge on the health, research and innovation (R&I) and the policy landscape in Africa with a specific focus on Personalised Medicine (PM). A bibliometric analysis of recent scientific literature was performed to better understand the scientific landscape of PM in Africa. In short: almost 82% of the articles found were related to 13 disease categories, predominantly infectious diseases, followed by cancer, immune and nervous system related diseases. Besides the bibliometric analysis, a review of health R&I policy landscape in African countries was performed. The entire outcome of the mapping activities can be found here.

Meet EU-Africa PerMed:

1. Online Information Days
   Content: 1-hour webinar to learn about the project, its objectives, activities and expected results.
   When: 1 December 2021: 11:00 am (CET) – in ENGLISH and
   13 December 2021: 11:00 am (CET) – in FRENCH
   Registration
2. 1st Stakeholder Workshop - hybrid event (Nairobi, Kenya)
   When: 9-10 February 2022 Interested? Please contact the project coordinator: erika.sela@innovatec.es

Follow EU-Africa PerMed: contact form; Twitter ‎@EU_AfricaPerMed.

EULAC PerMed: Clinical Trials Helpdesk

EULAC PerMed has recently launched its Clinical Trials Helpdesk, a platform to facilitate EU-LAC PM research in clinical trials to stakeholders of PM research in EU and LAC. This virtual helpdesk, publicly available and free of charge, is composed of three main components:

1. Regulatory requirements for clinical trials: A database on national regulations and Institutional Review Board (IRB) requirements for PM research in LAC countries. It contains a brief summary of national regulations for clinical research and the minimal requirements from IRBs, and references to the regulations of those boards (links to websites, or downloadable PDFs).
2. Information on funding agencies for clinical trials: Additionally, the database includes information on existing funding opportunities for PM research in each country, indicating if the funding can be used for international collaborations.
3. Networking information: A database of research teams listing those that have ongoing PM research projects in LAC countries, or in European countries with a particular interest in creating partnerships with LAC research institutions.

The three components allow investigators and other stakeholders to have key information in a single and centralised location.

Continuing with the virtual training activities, EULAC PerMed has organised two new webinars. “In-silico models and Personalized Medicine” took place on 25 November 2021 where Dr. Camargo (Sirio-Libanes Hospital in Sao Paulo, Brazil) and Dr. Kirschner (PTJ, Forschungszentrum Jülich, Germany) shared their experiences with these models.

Save the date: The “Personalized Medicine and Infectious Diseases” webinar is set for 16 December 2021 and will gather three internationally recognized experts in the field of infectious diseases Dr. Pion, (Hospital General Gregorio Marañón of Madrid, Spain), Dr. A. Martínez (Gorgas Memorial Institute for Health Studies of Panamá) and Dr. Scudeller (IRCCS Azienda Ospedaliero-Universitaria in Bologna, Italy).

HEcoPerMed: Review on Workhop “Personalised medicine specific health economic and payment modelling”

The HEcoPerMed workshop “Personalised medicine specific health economic and payment modelling” has been conducted on 5 & 6 October 2021 as a hybrid event in Budapest.

The overall aim of the EC-funded HEcoPerMed project was to respond to the demand for economic models to evaluate treatments made possible by innovations in personalised medicine.

During this by-invitation-only event the results and achievements of the consortium were presented. Furthermore, the 1st draft of a so-called “Position Paper: Personalised Medicine – How Health Technology Assessment ensures Value-based Implementation”, including a set of statements was presented and discussed on-site and online with around 70 international experts and stakeholders.

The launch of the final “Position Paper” is planned together with the presentation of the overall HEcoPerMed achievements and results in spring 2022 at a final conference in Brussels.

For further information, see HEcoPerMed – Health Economic Models for Personalised Medicine.

IC2PerMed: Update

As we approach the second half of IC2PerMed, we look back at two eventful years centered upon expertising, cooperation and mutual learning, and forward to another two exciting and decisive years ahead.

An extensive work of mapping in the first year has led to the preparation of several manuscripts covering overviewing and comparing the personalised medicine landscape of the EU and China regions, investigating policy agencies, policy planning and implementation, approaches, initiatives, actors and solutions for complex issues such as data transfer and protection and management of Big Data and ICT.

Furthermore, while BBMRI hosts four Virtual Round Tables focused on Biobanking, Data, ELSI and Quality, IC2PerMed is currently completing all its Working Group workshops gathering many experts from China and Europe to discuss and define priorities and success factors to successfully implement Personalised Medicine in the EU and China. Topics include building awareness and empowerment among patients and citizens, healthcare professionals’ education and curricula, shaping sustainable healthcare, Big Data and ICT solutions, bringing innovation to market, translating basic to clinical research and research funding. The focus groups’ results were each validated through 12 Delphi surveys distributed in both English and Chinese aimed at confirming priorities to be included into six position papers for the EC.

Lastly, IC2PerMed has also released the WeChat official page, which spreads also the latest news and the information on IC2PerMed’s latest developments.

Further information