All the 24 centers of the network decided to have a common national registry of PD patients to meet the following objectives:
- To provide indicators of activity to the Regional Health Agencies (ARS). The principle is to obtain indicators of expertise, recourse, research and epidemiological follow-up, care pathways,
To establish a register or an active file of patients likely to participate in clinical trials. The register applies to both industrial therapeutic trials and institutional studies. Minimum data will be collected,
To create a homogenous database of patients treated by deep brain stimulation that could be used for scientific purposes and for patient follow-up support,
To collect homogeneous data not limited to stimulated patients but to a large majority of Parkinson's patients for follow-up support,
To collect data for epidemiological purposes (environmental data, etc.),
To collect clinical, imaging and biological data.
Thus this database allows to have a global vision of the active file of patients followed up in the PD expert centers.
NS-Park has invested a fair amount of time and money to implement such a database, under the leadership of Pr JC Corvol (Paris center) supported by the 2 project managers of the network and a specific taskforce involving active investigators of the network. Specifications for the development of this database have been carefully prepared and a call for tender was launched in the end of March 2014 with the support of Inserm. The company EpiConcept has been selected to implement the database. This database is operational since February 2016. Currently clinical data from more than 25,000 patients are recorded in the database.
Access to this database (secure access) is via the website: https://nspark.voozanoo.net/nspark/