Presentation of the first Multiple Sclerosis Registry in Spain: EMDATA

About EMDATA

The EMDATA (In English: MSDATA) project in Spain aims to collect and store information of interest on issues related to people with Multiple Sclerosis. These data are crossed and analyzed so that they are later shown to the general public in an exercise of information transparency and visibility. Since spring, a total of nine reports have been published on this tool in Spain on topics as important and diverse as clinical trials, work impact, rehabilitation, anxiety, and depression, among others.

Launching the First Spanish MS Data Registry

The Spanish MS Society (Esclerosis Múltiple España) presented the EMDATA project – a technology that allows data to be collected, stored, and cross-referenced to improve the lives of patients – in October 2022 at the Microsoft headquarters in Spain.

The conference was opened by the president of EME, Alfonso Castresana, and the director of the Instituto de Salud Carlos III, Cristóbal Belda, who positively valued the commitment of the Spanish MS Society (Esclerosis Múltiple España) to the innovation that EMDATA represents, closely aligned with the objectives of supporting research and science in thecountry.

Julián Isla highlights the importance of “sharing data”

Next, Julián Isla, data and artificial intelligence analyst at Microsoft and founder of the 29 de Febrero Foundation, intervened, who made a very detailed intervention on the importance of patients taking control of their health, thanks to their data, to work together with their doctors and to promote research.

Former EME director and EMSP President, Pedro Carrascal, presents EMDATA

Pedro Carrascal – former director of EME and former President of EMSP – was in charge of presenting EMDATA and highlighted the objective with which this initiative was born:

“No one is leading this space. We patients have decided with EMDATA to respond to this need to collect and display data, and start building a registry from scratch to enrich the Multiple Sclerosis community.”

Pedro Carrascal also touched upon the first nine reports that have already been published on the platform and that address issues of interest to the group of people with Multiple Sclerosis.

“ We have found and surfaced public and private data that shows findings on demographic information, comorbidities, employment… this information is essential to know the reality of people with Multiple Sclerosis ”

– he explained.

The launch event ended with a panel discussion

The event culminated with a panel discussion in which Julián Isla himself and Pedro Carrascal participated together with Dr. Alfredo R. Antigüedad, head of the Neuroimmunology-MS Unit and Head of the Neurology Service at Cruces University Hospital, and Carina Escobar, president of the Spanish National Patient Organization Platform.

Alfredo Antigüedad highlighted the intervention that Julián Isla had previously made and praised that the change in trend “ is unstoppable ”. “ It is not so much a technological change as a cultural one: when the patient begins to demand the information to share it as he wishes, it will end up becoming a standard ”, he stressed.

For her part, Carina Escobar praised the importance of EMDATA and pointed out that in this way, patient organizations “ are on the right way ”. “ This project is important, and so is continuing to work together” – she highlighted.

Source: https://esclerosismultiple.com/emdata-se-presenta-a-lo-grande/?b=emdata