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Secretariat for the International Consortium for Personalised Medicine (IC PerMed)

Periodic Reporting for period 2 - ICPerMed Secretariat (Secretariat for the International Consortium for Personalised Medicine (IC PerMed))

Reporting period: 2018-11-01 to 2021-04-30

and environmental data. In the last decade, significant advancements have been made especially for the diagnosis and treatment of cancer or rare diseases. However, due to fragmentation and high upfront-investments, the implementation of PM into the health systems remains challenging, besides the various ongoing research and implementation actions on European, national and regional level. To identify and overcome the hurdles for PM, the International Consortium for Personalised Medicine (ICPerMed) was initiated in 2016 as a joint endeavour of over 40 international ministries and funding organisations from 28 countries and the European Commission (EC).
ICPerMed aims at aligning present as well as future efforts in all areas of PM by fostering international coordination of research and innovation funding. For this purpose, ICPerMed develops and operates an international platform for communication and collaboration between funders of PM research. It promotes an interdisciplinary approach to PM and generates best practices and guidelines, and supports PM-related standards, strategies and policies.
Being the ICPerMed Secretariat, this project substantially contributes to the success of ICPerMed by efficiently supporting and coordinating all ICPerMed activities and by assisting in the development of a sustainability strategy. Via monitoring ongoing research funding activities in Europe and beyond, the secretariat serves as the basis for evidence-informed allocation of research funding. The ICPerMed Secretariat provides professional support in organising all ICPerMed events and meetings of ICPerMed bodies. In addition, it guides the dialogue with relevant stakeholders and initiatives, including the so-called ICPerMed Family. The content-driven, organisational and logistical support of the ICPerMed Secretariat will maximise the unique and long-term impact of ICPerMed by strengthening the leading role of ICPerMed members in the successful implementation of PM in a global context. Furthermore, the ICPerMed Secretariat supports the preparation and establishment of the foreseen European Partnership for Personalised Medicine (EP PerMed).
Research Coordination and Cooperation:

The ICPerMed chairs and bodies (ICPerMed Steering Board, ICPerMed Action Item Groups and ICPerMed Executive Committee) were supported in their organisational and logistical needs.

The ICPerMed Steering Board was established as a new board. After the term of the Action Item Groups and Challenge Groups ended in 2021, the leads of the five newly established ICPerMed Working Groups became part of the Steering Board.

In 2021, the ICPerMed Working Groups were set up. Further, the establishment of an ICPerMed Advisory Board and an ICPerMed Stakeholder Forum were started in 2021.

An ICPerMed event concept was drafted and approved by the ICPerMed Steering Board and submitted to the ICPerMed Executive Committee for discussion. Two workshops and two conference were successfully conducted during the runtime of the project, in accordance with the event concept.

The ICPerMed Action Plan and Vision Paper were refined and detailed, and consensus built within in the ICPerMed Executive Committee. The Action Plan was published in March 2017, the Vision Paper in September 2019.

Three ICPerMed Recognitions "Best Practice in Personalised Medicine" were announced and conferred in 2018, 2019 and 2020, respectively.

Creating Synergies:

The ICPerMed Secretariat is in constant exchange and dialogue with relevant stakeholders as well as ongoing and planned initiatives in all areas of PM. A functional e-mail address, a website and a Stakeholder Forum were established and are maintained to facilitate communication. The exchange works e.g. via invitation to ICPerMed meetings, workshops and conferences as well as by invitations accepted by ICPerMed members to other projects, initiatives and PM-relevant events.

An active exchange, including biannual meetings, takes place with the seven Coordination and Support Actions in support of ICPerMed as well as the ERA Net Cofund ERA PerMed, under the umbrella of the so-called ICPerMed Family.

Since 2019, a group of ICPerMed and ERA PerMed representatives are supported in preparing the foreseen European Partnership for Personalised Medicine, including support in preparing major documents (e.g. a draft concept paper and guidance document).

Further, the ICPerMed Partnering Tool was launched in August 2017.

Research and implementation policies:

The ICPerMed Secretariat collects information on PM-related initiatives, programmes, research projects and activities in Europe as well as on significant advances in research and implementation of PM on an international level. It developed a mapping database that includes information about programmes allowing funding of research in the field of PM but also information of funding organisations within the participating ICPerMed member/observer countries. The database went online in June 2018 and is updated annually.

Dissemination:

The secretariat developed a dissemination plan specifically tailored to different target groups as well as dissemination material, such as a logo and a corporate design for ICPerMed and its website
(www.icpermed.eu).

The secretariat published State-of-the-Art Reports in 2018, 2019 and 2021. The reports assemble the outcome of ICPerMed activities, helping to facilitate the follow-up of the development of PM research and its implementation throughout Europe and beyond.

11 ICPerMed newsletters, 2 flyers and 15 press releases were prepared and published.

The ICPerMed Action Plan and ICPerMed Vision Paper were prepared for publication.

6 selected Best Practice Examples in Personalised Medicine were published on the ICPerMed website, beginning in March 2019.

In order to reach crucial target groups more rapidly, an ICPerMed Twitter account was started in February 2020.

Management:

The structure and processes for a management of the ICPerMed Secretariat itself was established.
As the secretariat of ICPerMed, this project assists the development and the various operations of an international platform for collaboration between funders of PM research. The major impact expected is based on the high strategic potential and uniqueness of ICPerMed itself. The secretariat supports the ICPerMed members to coordinate research and innovation as well as networking efforts and dialogue not only across borders, regions and countries, but also across disciplines and sectors. Thus, the secretariat significantly contributes to the success and long-term impact of ICPerMed by supporting its operation and by assisting in the interaction and cooperation with other relevant parties and key stakeholders in the area. It maximises visibility of ICPerMed itself, of the results and achievements of ICPerMed and of funding activities initiated by its members.

Furthermore, the secretariat contributes to strengthening ICPerMed members’ leading role in the successful implementation of PM in the global context, provide support and guidance in balancing the research responsibilities regarding PM implementation between the EC and the MS, and provide a sustainable platform for "innovation diplomacy" in the area of PM, going beyond health diplomacy and science diplomacy.
ICPerMed Vision Paper
ICPerMed Governance
ICPerMed Family
ICPerMed Action Plan