Acknowledgement of contributors

The development of www.emergencyprotocol.net has been a process rather than one project….

After the SSIEM Sponsored Satellite Symposium "Emergency regimes: current status and options for improvement" in Birmingham in 2012, the first version of the UMCG guideline “Generic emergency protocol for patients with non-intoxicating type IEM” was implemented in 2014. The following colleagues have been fundamental since then: Foekje de Boer, Esther van Dam, Marieke Fokkert-Wilts, Tom de Koning, Charlotte Lubout, Margreet van Rijn, Iris Rodenburg and Francjan van Spronsen.

Subsequently, solicited and unsolicited feedback has been received from local and metabolic health care professionals (including the European Metabolic Group meeting Workshop ”Dietary management in GSD type I” and the IGSD2017 Networking session “Emergency protocols for hepatic GSD”) which significantly improved the protocol. We also received feedback from patients from our center and during patient organization meetings, both nationally and internationally. Thanks to funding by Fonds NutsOhra (project 1402–028 to Terry G.J. Derks), the UMCG Junior Scientific Masterclass (JSM MD/PhD grants to Irene J. Hoogeveen and Fabian Peeks), and Round Table 34 Groningen, the first website was created to generate the emergency letters. In addition to the previously mentioned colleagues, Irene Hoogeveen, Fabian Peeks, Sebastiaan te Boekhorst, Robert-Jan Zandvoort, and Rob Burghard collaborated in that phase.

CONNECT MetabERN was granted in an eHealth call (2018-EU-IA-0173) and after a kick-off meeting in Hannover on 02/12/2019, the protocol has been revised based on discussions in WebEx meetings on 27/02/2020 and 01/04/2020, input by emails and via a SurveyMonkey questionnaire (sent on 20/03/2020; 36 responses). The following persons contributed to the CONNECT MetabERN project:

  • Arianna Maiorana
  • Lut de Baere
  • Cinzia Bellettato
  • Sebastiaan te Boekhorst
  • Foekje de Boer
  • Annet Bosch
  • Julieta Bonvin Sallago
  • Lorenzo Botto
  • Michaela Brunner-Krainz
  • Thomas Casswall
  • Camilla Carøe
  • Maria Luz Couce Pico
  • Hanka Dekker
  • Dries Dobbelaere
  • Mari Alice Donati
  • Francois Eyskens
  • Enrique Lande Contreras Pulido
  • Terry Derks
  • Carolina Fischinger Moura De Souza
  • Marieke Fokkert-Wilts
  • Pilar Quijada Fraile
  • Sabine Fuchs
  • Sarah Grünert
  • Dorothea Haas
  • Michel Hochuli
  • Irene Hoogeveen
  • Anne Hugon
  • Svetlana Lajic
  • Daniela Karall
  • Dwight Koeberl
  • Isabelle Moenig
  • Marie-Cécile Nassogne
  • Philippe Labrune
  • Corine van Lingen
  • Elena Martín Hernández
  • Diego Martinelli
  • Klaus Mohnike
  • Chiara Montanari
  • Rossella Parini
  • Shamima Rahman
  • Magali Reyes
  • Alessandro Rossi
  • Maurizio Scarpa
  • Marit Schwantje
  • Anastasia Skouma
  • Pietro Strisciuglio
  • Maren Thiel
  • David Weinstein
  • Athanasia Ziagaki

www.emergencyprotocol.net editors:
Hanka Dekker, Terry Derks and Sebastiaan te Boekhorst

www.emergencyprotocol.net language editors:

Dutch Terry Derks and Hanka Dekker
English
French
German
Greek
Italian
Portuguese Carolina Fischinger Moura de Souza
Spanish Enrique Lande Contreras Pulido, Magali Reyes, and Elena Martín Hernández
Swedish