iNTD Database for SSADH Patients

iNTD Database for Non-United States SSADH Patients

In 2013 the initiative “International Working Group on Neurotransmitter Related Disorders (iNTD)” was founded. The major goal of Network I is to set-up a web-based patient registry for inherited defects of biogenic amines, pterin, folate, serine, glycine and GABA  metabolism.

It includes 42 scientific and clinical partners from 26 countries. This aims to provide a basis for improving our understanding of the epidemiology, genotype/phenotype correlation and outcome of these diseases, their impact on the quality of life of patients, and for evaluating diagnostic and therapeutic strategies.  Based on the evaluation of current known diagnostic and therapeutic strategies, consensus care guidelines will be developed.

The SSADH Association is a member of the iNTD and we have been asked to have our members join the registry. To date the iNTD has 15 SSADH patients registered. So, at this time if you are not already part of the iNTD please get in touch with Kathrin Jeltsch and she will help get you registered.

You can email Kathrin at:
Kathrin.Jeltsch@med.uni-heidelberg.de

Click here to link to the iNTD web site.

Thank you in advance for your help getting all patients represented with the iNTD registry.  This is a good first step to be prepared for the SSADH Natural History Study.

SSADH Association
Carolyn Hoffman
498 Lillian Court
P.O. Box 180622
Delafield, WI 53018 USA
Phone: (262) 646-5133
choffmanwi@aol.com