The CONNECT MetabERN project: towards personalized emergency letters
This generic protocol works on the basis that the key measure for many inborn errors of metabolism
(IEM) emergency protocols is to prevent catabolism and subsequent metabolic decompensation by
the promotion of anabolism.
An initial version of a website to automatically generate emergency letters for patients with hepatic
GSD was used in The Netherlands by the UMCG. Metabolic specialists from many countries world-
wide have collaborated in the CONNECT MetabERN project to improve and expand the emergency
letters and their availability for HCP and patients.
By using www.emergencyprotocol.net, personalized emergency letters can be automatically
generated for (families and) patients with the following fatty acid oxidation disorders (FAOD) and
glycogen storage diseases (GSD)
The hyperlinks direct to specific IEMbase information.
* divided into type IIIa and IIIb
** summarized as GSD IX
# summarized as MADD
## summarized as LCHADD/MTP
Goto the CPMS website