Scherm­afbeelding 2024-09-16 om 15.16.47

NEWSLETTER, ISSUE 6
29 July 2024

Dear patients, colleagues, partners, and investigators,

With this newsletter we present to you the 6th update of the NGID project.

During the last months plenty has happened within NGID and we want to share with you the most important facts and progress in a nutshell.

We want to thank all of you again for your effort and contribution to NGID and we wish you a nice and relaxing summer period.

The NGID Supervisory Team

Table of Contents

Upcoming key dates

28 Augustus:  Inloopuurtje patiënten-vertegenwoordigers

4-7 September:  ESDR Meeting, Lissabon

14 September:  World Eczema Day, Breukelen & VMCE Patients Day

25-28 September:  EADV Meeting, Amsterdam

Annual Symposium Maastricht

On June 21, we commemorated the inaugural anniversary of our NGID consortium and convened our yearly symposium. This time, our gathering took place in Maastricht, at the exquisite Bonnefanten Museum along the Maas river.

Approximately 60 people from over 20 diverse institutions convened, fostering lively interaction, exchange, scientific discourse, and reunions among familiar faces and newcomers. This dynamic atmosphere was partly attributed to the ‘mixed-table lunch’ that was arranged.

The event featured a comprehensive agenda including presentations by NGID researchers, input from patient advocates, lectures by our partners Johnson & Johnson and Stichting Proefdiervrij, and a keynote lecture by Prof. Martina Marchetti-Deschmann from the Technical University of Vienna. The gathering offered a stimulating blend of scientific insights, showcasing initial findings from various NGID projects, insights into current and future research, patient viewpoints, and industry perspectives on biomedical research.

A special acknowledgment is extended to our NGID PhD students who shared their study plans and preliminary findings. Your exceptional performances were commendable, and we eagerly anticipate your growth in the years ahead. Your presentations provided a captivating preview of the diverse research, experiments, and datasets to come, heightening our anticipation for the contributions NGID will make and further fuelling our enthusiasm and camaraderie. This networking occasion undoubtedly bolstered collaboration within NGID. In total, we saw 15 posters covering all workpackages and the very important input from patient associations. Thank you for this inspiring NGID day in Maastricht!

NGID website launched

We are finally online now! Just in time for the annual meeting in Maastricht we have launched the NGID website. Beautifully in NGID branding style (created by students of the HAN in 2023) the website presents all information, facts and figures concerning the consortium.

It comprises the most important information regarding the project, e.g. all work packages and the partners and collaborators of the consortium. On the website you will also always find the latest news about research progress (e.g. ongoing trials and analyses), NGID outreach (e.g. publications and disseminations) and information about upcoming events (NGID consortium meetings or related events). To keep our website up to date we also rely on you all, so please get in contact with us (e-mail to: Hanna.Niehues@radboudumc.nl) if you have news (new consortium members, publications, upcoming events etc.) or any progress regarding NGID that we can share on the website.

Credits to Laura Loos (https://lauraloos.nl/) for building the website.

Meetings of advisory committees

The NGID consortium is assisted by several advisory committees. Two of them met on the day before the annual symposium in Maastricht to discuss the progress and future of the project: the scientific advisory board and the user committee.

The scientific advisory board mainly advises on scientific progress, results and future goals. This council consists of 6 international leading scientists in the field of dermatology and in the techniques used in NGID. Prof. Martina Marchetti-Deschmann even came over from Austria, where she works at the Technical University of Vienna. She and her fellow scientific advisors (who joined the meeting online) provided input that can be further used to improve the progress, results and impact of NGID.

The NWO user committee consists of representatives of the 7 patient associations affiliated with NGID, 3 industry partners, the NWO program officers, several independent members and a delegation from the NGID management team. This committee assesses the annual report and advises on the usability of the advances for the end users (patients, dermatologists and industry).

Both committees make a valuable contribution to the project and their advice will be incorporated into the work of the coming years.

The annual report describing the goals achieved over the past year (year one of NGID) has been submitted to NWO as planned. For those who are interested, a copy can be requested from the project management team, Ellen Stijl and Lisanne Wezendonk, via NGID@lumc.nl.

Update clinical trials

Results of SKINERGY CTCL are pending. Results will be available and presented in September 2024 at EADV in Amsterdam.

SKINERGY PSORIASIS has finished clinical phase, database is locked and bio-analysis is pending. Full data set is expected in 2024 – publications writing.

SKINERGY CLE has been approved by Ethics Committee (EC). Patients are pre-screened at LUMC and Erasmus MC and enrollment of patients has started in March 2024.

SKINERGY CindU has been approved by EC. Clinical trial agreement pending and start of execution in August/September 2024.

Main SKINERGY trial submission was slightly delayed to take along all input. Trial design is prefinal with feedback from patients, scientific advisory board, partners and clinicians. Submission to EC is expected in September 2024 with central and local EC approval expected October 2024. We do have green light from EC to submit as non-interventional study (non-drug) study, hence our biomarker approach has been confirmed.

Publication in NTvDV

A large proportion of the success of NGID is nation-wide large-scale collaboration. Joining forces and maximizing outreach to all stakeholders (within and outside the consortium) is key. Part of our strategy is therefore to (regularly) reach out to our stakeholders. We want to inform as well as engage them to participate in the consortium, e.g. by gathering their expertise and by using their network to colleagues and access to other stakeholders. For engagement of our clinical partners and stakeholders we published an article about NGID in the NTvDV (“Nederlands tijdschrift voor Dermatologie and Venerologie”). Linda Godding, Juul van den Reek and Marieke Seyger (Work Package 4.2, Radboudumc) in collaboration with consortium members of all work packages beautifully summarized the scope of NGID and our ambitions.

Have a glimpse on this paper here, and for the full version please go to our NGID LinkedIn page: https://www.linkedin.com/posts/next-generation-immunodermatology_ntvdv-artikel-ngid-project-activity-7216704513359937538-LGtp?utm_source=share&utm_medium=member_desktop

Questionnaires on BIOMARKERS

Team-effort is key for the success of NGID. To gather data on criteria for potential biomarkers that we are seeking for, the researchers of Work Package 4.2, led by the team of Marieke Seyger, Juul van den Reek and Linda Godding (Radboudumc) in collaboration with our partner patient organisations and collaborating clinicians developed questionnaires. At the moment these are shared within the NGID network and via diverse channels of communication for maximal outreach and data collection. You can also get access via the call and QR codes below:

[ Note: The call is in Dutch as the questionnaires themselves are also in Dutch language ]

Help ons de juiste biomarkers vinden voor inflammatoire huidaandoeningen!

Het NGID-project streeft ernaar om de juiste zorg, voor de juiste patiënt, op het juiste moment te leveren. Ons doel is om dit te bereiken door biomarkers te identificeren voor 6 inflammatoire huidaandoeningen.

Maar welke biomarkers zijn de juiste? Om deze vraag te beantwoorden, willen we inzicht krijgen in de behoeften en wensen van de eindgebruikers van biomarkers in de dagelijkse praktijk: de dermatologen en de patiënten.

Daarom nodigen we u uit om deel te nemen aan ons vragenlijstonderzoek. Uw input is essentieel voor het vinden van de biomarkers die het meest relevant en nuttig zijn in de klinische praktijk.

Doe mee en maak een verschil in de zorg voor huidaandoeningen!

Patient engagement

The ultimate goal of NGID is to improve the care for patients with dermatological diseases. We strongly believe that research for patients strongly benefits from collaboration with patients. Therefore we are very happy to have patients, represented by the patient associations for each exemplary disease (see all members here below) and the umbrella organisation ‘Huid Nederland’ on board in the consortium:

For most fruitful collaboration and onboarding of all patient organisations within NGID we initiated monthly online meetings (“inloopuurtje patiënten”) with the patient representatives some weeks ago. We meet for one hour to exchange information, share progress updates from the different work packages, brainstorm about (future) research projects and NGID activities, all in the light of patient participation, and also for general chatting to get/stay in contact with each other. Next to the patients, Robert Rissmann (or another delegate of the Supervisory Team), the Strategic Utilization Manager (SUM, Hanna Niehues) and Sylvia van Beugen and/or Antoinette van Laarhoven (Work Packge 2.1, UL) are joining the meeting. Furthermore, depending on the topics of the meeting colleagues from other WP’s are invited to share data/progress or explain about specific topics.

If you are interested to join and think along about patient engagement and participation within NGID we are happy to welcome you. Please contact the SUM (Hanna.Niehues@radboudumc.nl) for online access to the meeting.

A few examples of collaborative efforts with our patient associations are the joint organisation and co-hosting of the annual meeting in Maastricht, the development and spreading of questionnaires for patients on biomarkers or the design and execution of a Master curriculum course on immunodermatology and clinical pharmacology.

We want to thank for the effort of our patient partners and aim to even strengthen this team-work during the course of NGID.

Communication & Collaboration

The NGID consortium represents a special collaboration with a diversity of stakeholders across several domains. Successful collaboration and communication between the relevant stakeholders is crucial in attaining the project’s goals.

That is why researchers from HAN University of Applied Sciences (Els van der Pool, Nanda Olde and Debra Trampe together with Keun Young Sliedrecht and Harriët Onderstal) systematically monitor the collaboration and communication within the consortium. As part of this monitoring, they conduct annual interviews with several NGID stakeholders to collect insights into their perceptions of and experiences with the collaboration and communication so far, as well as their aspirations for future development.

The methodological analysis of the interview results will focus on the communication and skills necessary for boundary crossers, a role that all members of the NGID consortium embody. Our work necessitates collaboration across the boundaries of various domains and institutions. It is essential that we avoid concentrating solely on our individual segments of the NGID project (recall the symposium analogy of the elephant). By working together, we can gain a comprehensive understanding of the larger picture.

The results of the first round of interviews will be available after the summer.

Regional immunodermatology meeting

NGID in the spotlight at the regional immunodermatology care network

On July 4, dermatologists and allergists from the peripheral centers of Erasmus MC came together for the first time as a regional ‘immunodermatology care network’. An initiative by Martijn van Doorn from the Erasmus MC as a UCARE center who is heavily engaged in NGID.

It was an inspiring and interactive evening with this time chronic urticaria and angioedema as focus subjects. With Maurits van Maaren as guest speaker, current protocols and best practices were shared and discussed.

The NGID consortium with upcoming clinical studies in the field of chronic urticaria was also highlighted by PhD candidate Fauve van den Berge. She asked the public to provide input for the biomarker study and requested all dermatologist and allergists to participate or invite their patients to do so.

This is a great example on how we can put NGID in the spotlight within the Netherlands and we can warmly recommend this regional network approach to all NGID partners within the other Dutch academic centra. Please get in contact to share ideas or request information.

Publications

Scientific publications

Ceramides are lipids found in the stratum corneum skin barrier and their presence is essential for barrier integrity.

We compiled all available literature on which ceramides are present in diseased skin and implemented this into a review and (modest) meta-analysis. It shows that the skin of patients with atopic dermatitis, psoriasis and ichthyosis share the same differences in their ceramide profile.

Additionally, we performed a clinical trial where we monitored ceramides and barrier function of psoriasis patients during treatment with guselkumab or placebo. By showing that the ceramide profile and skin barrier improve during guselkumab treatment, but not placebo, we are able to demonstrate a strong connection between disease and barrier dysfunction.

Read the articles here:

📚 Review in JID: https://lnkd.in/epZ9C6xF

💊 Trial in JLR: https://lnkd.in/esgM3XZQ

Noteworthy, our findings have triggered a commentary by Feingold & Elias, two of the key opinion leaders in the dermatology field. They nicely embedded our finding into the broader context – have a look https://www.jlr.org/article/S0022-2275(24)00098-1/fulltext

Thesis defense

These papers are part of the PhD thesis of Jannik Rousel entitled:
“ Non-Invasive Biomarkers for Inflammatory Skin Diseases: Towards Systems Dermatology”.
The public defense will take place on 24th October at 14:30 at Leiden University. If you want to follow the defense you can join online via the webstream link https://www.universiteitleiden.nl/en/academic-staff/livestream-phd-defence

[ Please all keep track on publications to monitor the NGID output and impact (fill in the provided digital trackers or contact Hanna.Niehues@radboudumc.nl or NGID@lumc.nl ]

Scientific dissemination

Posters/presentations EADV (Amsterdam), ESDR (Lisbon) and ETRS-WHS-SKINTERM (Amersfoort)  in September:

  • Elise Beljaards, Decreased skin barrier function, increased bacterial colonization, and inflammation correlate with progression of Mycosis Fungoides and Sézary Syndrome
  • Menthe Bergmans, Multimodal assessments of the treatment response of guselkumab in mild psoriasis patients, an exploratory randomized placebo-controlled clinical trial
  • Mariona Oliver, Insights Into Symptom Monitoring and Nocturnal Scratching Activity in Mycosis Fungoides Using Wearable Technologies and ePROs
  • Linda Godding, Deep-phenotyping of six immune-mediated inflammatory diseases: Launch of the Dutch flagship project Next Generation ImmunoDermatology
  • Jannik Rousel, Altered stratum corneum ceramide profile and barrier dysfunction in psoriasis are restored by treatment with guselkumab
  • Catherine Mergen, The stratum corneum ceramide profile is altered in lesional mycosis fungoides
  • Catherine Mergen, Lesional psoriasis is characterized by a reduced barrier function and an altered stratum corneum ceramide profile
  • Catherine Mergen, Guselkumab normalizes barrier dysfunction and altered stratum corneum ceramide profile in psoriasis
  • Rens Peters, Combined Th2 and Th17/22 cytokines model atopic dermatitis pathophysiology in vitro

‘Welcome to the NGID’

We are happy to welcome some new faces to NGID again.  We are happy to have you on board.

[ Please all keep track on new/changes of personnell as we need to report this to NWO (fill in the digital trackers or contact NGID@lumc.nl)]