Para informaros sobre cómo obtener la documentación para formar parte del registro, por favor, poneros en contacto con la AEG (email@example.com).
At the AEG meeting last Saturday, October 14, 2017, the current situation of the European register of patients was explained, a subject, fundamental for the future of the investigation and the knowledge of the galactosemia. It was agreed to re-remind both associates, as not associated the relevance and importance of it and to re-disseminate both on the web and on the facebook of AEG.
Recall that given the few cases of galactosemia in all countries, the realization of this European registry has always been a target for those teams that carry out their research on galactosemia. The process has been long because each country has its own legislation on data protection and has had to pass through the ethical committees of all countries, before having the final approval.
The registry consists of a large database of the maximum number of European patients with all the medical information of those who voluntarily decide to surrender their medical records. The only thing these patients (or their legal guardians should do if they are minors) are to give their consent to be part of the registry.
It is not obligatory to participate in it, but as an Association we strongly recommend giving consent and participating in the registration. The more patients that collect the registry, the more relevant will be the information collected and more useful for future and current research that will benefit the quality of life of our Galactosemics. There are still many aspects that are unknown about the disease.
The AEG is not going to have the data of any patient in any case. Of course, as an association the researchers have asked us to give maximum dissemination to that record. That is why we ask you to circulate this information through your social networks, friends and your medical teams.
To inform you about how to obtain the documentation to be part of the registry, please contact the AEG (firstname.lastname@example.org).