17 April 2025
News
As the F-CRIN labeling campaign for new networks draws to a close, Claire Camus and Fanny Granado, coordinating project managers for the CRISALIS network, and Amandine Bordet and Alizé Chalançon, coordinating project managers for the ACT4ALS-MND network, look back at the milestones since their labeling in 2018 and 2022 respectively.
Alizé Chalançon, Amandine Bordet, Fanny Granado et Claire Camus, chefs de projet pour les réseaux ACT4ALS-MND et CRISALIS - Crédits : F-CRIN
How have your networks evolved since their labeling by F-CRIN?
Claire Camus:The labeling of CRISALIS by F-CRIN on January 1, 2018 was a real gas pedal for the network. From the outset, coordinators Alain Didier and Antoine Magnan were able to benefit from support to implement an action plan, which helped to better define the network's governance and priority axes. The development of two major projects was also supported until my arrival as CRISALIS project manager in December 2018: support for the submission of a PHRCN (BENRAPRED) and the adaptation and implementation in France of a Belgian clinical trial (PREDICTUMAB). To enable the network to be better identified as the main interlocutor in national clinical research on severe asthma and to be able to carry out projects, F-CRIN financed part of my position as project manager - the remainder being provided by donations or sponsorship. With the arrival of the new coordinators, Gilles Devouassoux and Laurent Guilleminault, in early 2022, the sponsorship and partnership dynamic has continued to evolve, enabling us to operate more autonomously with a view to perpetuating the network and consequently my position. After a lengthy search for funding, in November 2022 we succeeded in recruiting Fanny Granado independently as our second project manager.
F-CRIN provided us with a great deal of support for almost three years: this enabled the network to identify the right contacts and define the administrative and financial circuits with each supervisory body first, then gradually with the various external partners. Today, we are able to evolve almost autonomously on many levels.
Amandine Bordet: For ACT4ALS-MND, the labeling is more recent: we have been labeled since 2022. This label was an important step, as it enabled us to obtain additional funding. Before that, we were very small: just one part-time employee. F-CRIN's financial support enabled us to structure the team by recruiting a full-time project manager, and to begin the real work of consolidating the network. We have also benefited from the experience of our coordinators in structuring the network, who each have complementary profiles - links with the Health and Rare Diseases sector, international roots, methodological expertise, associative involvement... This diversity is a real asset for the network.
What have been the most significant contributions of the component days organized by F-CRIN?
Fanny Granado: The "component days" are a real lever for us. These meetings, organized twice a year, enable us to benefit from concrete feedback from other clinical research networks, on other themes. It's a unique opportunity to discuss the different ways of structuring a network and share best practices. For example, we were able to see how others had structured their governance, their internal communication system, or even their business model, and that helped us a lot. For example, by talking to more advanced networks, we were able to identify tools and methods that enabled us to improve our own structuring. Belonging to a "family" of networks also enables us to exchange ideas with other thematic networks, to see how we can develop joint projects. For example, we regularly invite other F-CRIN networks to our annual CRISALIS day to discuss our operations and research themes of common interest: FORCE (obesity), FRADEN (atopic dermatitis), MUST (primary care)... This year, for example, we invited the MUST network and the Euclid expertise platform to present their activities and to reflect together on possible interactions with CRISALIS. We are also fortunate to be able to exchange ideas easily with the NS-PARK network (Parkinson's, one of the oldest networks in the infrastructure), whose coordination is based in Toulouse, like that of CRISALIS.
Alizé Chalançon: For us too, the component days were extremely valuable, especially at the time of the network's initial structuring. Even though we didn't call on F-CRIN directly, we benefited greatly from the sharing of experience, the tools presented and the exchanges between networks. For example, the network's charter and our excess cost grids were drawn up on the basis of the models shared during these days. This is really where we learned how to formalize certain documents and structure our practices. In this sense, F-CRIN has acted as an incubator, a catalyst that saves time by drawing inspiration from what already works elsewhere. What's more, these days encourage meetings and collaborations.
What is your assessment of this evolution today, and what are your prospects?
Claire Camus: Today, CRISALIS is more organized, more legible and more visible in the field of clinical research in severe asthma. We have succeeded in formalizing our positioning with the help of F-CRIN, but above all thanks to the involvement of all network members! This has enabled us to develop collaborative projects with other players, and to strengthen our network. For example, this year we are launching the WIDUSA project, a PHRCN-funded academic study which will assess the possibility of discontinuing dupilumab (Dupixent®), an expensive but highly effective treatment for severe asthma, without worsening patients' health. This is the first academic study in the world to examine the advisability of stopping this treatment in patients who have been treated for at least 3 years and have been in remission for a year!
Amandine Bordet: After two years of launch, we can say on our side that the network is entering a new phase. The year 2024 was marked by a stabilization of the team, and 2025 will be the year of consolidation. One of our ambitions is to implement a quality approach, with the aim of achieving ISO 9001 certification. Another challenge will be to develop our "communication" activities. This will require us to think long-term, to clarify our positioning, and to strengthen our foothold at both national and European level. We also plan to explore synergies with other networks: for example, on April 14 and 15, 2025, we'll be taking part in the Journées de neurologie en langue française with three other F-CRIN networks: FCRIN4MS, NS-PARK and StrokeLink. This is a first, and we're counting on this event to develop our presence in the clinical research landscape!
