Scherm­afbeelding 2024-06-03 om 15.23.18

NEWSLETTER, ISSUE 1
1 December 2022

Dear Colleagues, partners, investigators and patients,

Welcome to the first newsletter of the NGID project. We want to regularly update everyone involved in the project with our newsletter which will contain progress of the project as well as important project-related information for you to be aware of.

Currently we are in the start-up phase and it has been a busy few months and as NGID Supervisory Team we are pleased to share with you the progress since the official award last March. To date, the Supervisory Team and Management Team have been installed and activities including scientific discussions, legal setup of the draft consortium agreement and operational as well as administrative initiation are being performed.

In this newsletter you will find these items listed and described in detail on the next pages.

Finally, we would like to thank you for your contribution and commitment to make NGID a landmark project for patients with chronic immune-mediated inflammatory skin diseases.

We wish you Merry Christmas and a relaxing holiday season and we do look forward to an exciting start in 2023!

Yours, The NGID Supervisory Team

Table of Contents

KEY ANNOUNCEMENTS

Official intake by Dutch Research Council (NWO)

We had three intake sessions with NWO regarding the start-up of the project (22 April, 23 June & 21 November). Best practices were shared about startup and conduct of the projects. All gathered information was discussed and integrated during our Brainstorm Day of the Supervisory Team in Utrecht (back in May we called ourselves the “writing team”, see group picture left).

Governance

The initial organization structure of NGID has been changed to a more common governance. All WPLs together with representatives of the patient organizations and the University of Applied Sciences form the Management Team (MT) of the project. Executive decisions are taken there and the Supervisory Team (ST) (Vreeken, van Doorn, El Ghalbzouri, van den Bogaard, Rissmann) prepares agenda items to be decided upon in the MT. The Supervisory Team deals with daily operations. We will prepare a separate communication with governance, organizational chart and the persons in the bodies. Also, the revised governance is integral part in the consortium agreement and hence needs approval by all consortium partners.

Communication

The Supervisory Team is currently making a communication plan, the NGID website is being built and populated with content. The University of Applied Sciences (Hogeschool Arnhem Nijmegen (HAN)) will take an important part in these activities to check for optimal and inclusive communications. This newsletter will be an important part of keeping all partners, scientific collaborators and patients informed. We plan to send a quarterly update with this newsletter to all interested.

Project management and support

Jos van Maasacker (Evers & Manders, E+M) has been involved the current phase of project start-up as he already coordinated the writing and proposal phase of NGID. Jos’ role entails project process supervision and coordination of the review & execution of the consortium agreement. We are on look out for a new Project Manager from the start of the project to be involved during the six years to come.

Noortje ten Hoeve joined us as administrative support. She works at Maastricht University and will be responsible for internal communication, the website and coordination of administrative tasks.

During the startup phase Robert Rissmann (r.rissmann@lacdr.leidenuniv.nl) and Noortje ten Hoeve (noortje.tenhoeve@maastrichtuniversity.nl) are the primary persons of contact.

Consortium agreement

During the last months we have been drafting the CA. Based on the official template of NWO and with the input from different TTO’s and senior advisors we have compiled a final draft. Currently NWO is approving the document and once officially greenlighted we will send it to all signatories for legal review. We expect to share the CA in January to all signing consortium partners, and require the fully signed document in May.

Project timelines

Due to our current status in the startup process we expected to finalize the CA around mid Q2 2023. The official kick-off will take place on 3 July 2023 in Leiden. Only then we can start to hire people and fill positions.

Finances

University Maastricht will be the main financial controller and financial administrator of this project. Sef Janssen was appointed as senior financial advisor. The topline budget was approved by NWO and currently we are allocating a more detailed budget per WP and institution. We will follow up once the operational and scientific details per WP are better defined.

Narrower work package definition

Besides the legal work and the project management initiation all WPs are also being defined in more depth. All WPLs met twice on 19 October and 8 December virtually. We discussed mainly the progress of each WP regarding a more concrete work plan. This will yield the work plan per WP as well as a detailed budget (see finances). All WPLs will gather on 12 January to brainstorm and specify activities, tasks of each individual WP as well as overarching deliverables, bearing in mind our project mission:

NGID mission: “The right care for the right patient at the right time”

For now we wish you a Merry Christmas and we look forward to an exciting 2023 and our collaboration in NGID.