NEWSLETTER, ISSUE 5

8 April 2024

Dear patients, colleagues, partners, and investigators,

With this newsletter we present to you the 5th update of the NGID project.

First, we would like to thank you for your active contribution in the last couple of months. We had multiple interactions e.g scientific at the NVED annual congress on 18/19 January in Lunteren, virtual meetings with patient associations (31st January) and also an online progress meeting 2nd February. We truly value your efforts and input to make this a landmark project for (Dutch) dermatology community. In this newsletter you will read on these activities in more detail.

There is one important update regarding project management. We have finally an excellent partner to perform all coordinating work and we are proudly introducing the project management team at LUMC under the supervision of the senior projectmanager dr. Ellen Stijl-‘t Hart. Please see page 3 for an overview from her and we have a brand new project email address for all your correspondance: NGID@lumc.nl.

Importantly, we have set the date (Friday, 21st June) and location for our annual NGID Symposium in Maastricht. Please register via the link for participation (free registration).

Finally, we have good news from the science team as we published the 2nd NGID paper in the Journal of Investigative Dermatology.

See you in Maastricht,

The NGID Supervisory Team

Table of Contents

• MILESTONE HIGHLIGHT: Scientific publication of our consortium
  • Summary
• ANNOUNCEMENTS
  • Agreement(s) [WP management]
  • Project management update [WP management]
  • HR [all WPs]
  • TIMELINES
  • Report from the scientitic meetings [WP dissemination]
• UPDATE WP2.2 STATUS Clinical trials
  • Annual NGID symposium

MILESTONE HIGHLIGHT: Scientific publication of our consortium

With great pleasure we are presenting our second scientific NGID publication in the Journal of Investigative Dermatology #JID – a top journal in #skinscience entitled:

Similar alterations of the stratum corneum ceramide profile in atopic dermatitis, psoriasis and ichthyosis: results from a systematic review and meta-analysis

Summary

Ceramides form an import part of the upper most layer of the skin, the stratum corneum. They are indispensable for a proper skin barrier function and in many cutaneous diseases, the specific composition of ceramide subclasses are altered. In this review we systematically mapped the ceramide profile of different skin conditions to evaluate the consistency in 75 studies. The complete ceramide profiles were extracted from the articles and an average ceramide profile was calculated per disease. As a result we observed that most literature was available for atopic dermatitis, psoriasis and ichthyosis. These conditions share similar alterations to the ceramide profile with literature being well-aligned on increased Cer[S] subclass and decreased Cer[P] subclass as well as a decreased ceramide chain length. In conclusion, similar alterations in the ceramide profile were observed in several conditions.

Congratulations to all authors at LUMC, Erasmus MC, Leiden University and CHDR!

Publication link: https://doi.org/10.1016/j.jid.2024.02.010

ANNOUNCEMENTS

Agreement(s) [WP management]

After the successful execution of the 1st version of the Consortium agreement (CA) we are currently starting to draft a 2nd version of the CA with mainly administrative changes. We anticipate to have a final draft of version 2 during the summer months.
For the SKINERGY trial we are drafting separate Clinical Trial Agreements. The first draft is currently being reviewed by Utrecht UMC and University of Maastricht.

HR [all WPs]

We need to track and report all employees to NWO. Please keep us informed! We welcome new staff members to the NGID team and are happy to have you onboard!

TIMELINES

Report from the scientitic meetings [WP dissemination]

While our project is still in the first year, we already managed to reach out to the scientific community on several occasions.

We presented data and posters in Vienna at the 5th Inflammatory Skin Disease Summit (November 15-18, 2023), the Annual Meeting of the American Academy of Dermatology (San Diego, March 8-12) and in Colorado Springs at the American Society of Clinical Pharmacology and Therapeutics (March 27-30). Finally, in January we went to Lunteren to the annual meeting of the Dutch Society of Experimental Dermatology (NVED). As satellite meeting to the NVED we met with all work package leaders to discuss the project progress. During the main meeting days on January 25/26 we met all scientific NGID members for indepth discussion and having a chat and a drink. The first NGID posters and our PhD students were spotted as well. A NGID highlight was the key-note lecture by prof. Ellen van den Bogaard entitled “Next Generation ImmunoDermatology (NGID): From one-size-fits all to high-tech personalized skin care.” She delivered an inspiring overview of the project and the first results.

UPDATE WP2.2 STATUS 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 EC. Patients are pre-screened at LUMC and Erasmus MC and enrollment of patients has started in March 2024. PATIENT LINK.
SKINERGY CSU has been approved by EC. Clinical trial agreement pending and start of execution in May 2024.
Main SKINERGY submission was delayed to take along all input. Trial design is pre-final with feedback from patients and clinicians. Submission to EC is expected in May 2024 with central and local EC approval expected July/August 2024.

Annual NGID symposium