Work Package 1: Platform Development

Development of a Patient Data Platform for Clinical Research

The objective of Work Package 1 is to provide a customised Patient Data Platform for Clinical Research suited to the needs of the international rare diseases community, using ALS as an exemplary disease.

Precision medicine will require the design, development, and integration of software to support the management of comprehensive patient data such that it can be used in research, drug development and clinical trial design. This platform will be designed to collect all information relating to the patient and caregiver journey across Europe from first presentation through the course of their illness. The data collected will include clinical, laboratory, imaging, signal analysis, and health economic data. This will help to inform researchers of the experience of both patients and their caregivers. 

This information will be collected electronically and stored in a customised system that will allow researchers to search and integrate across different types of data and across different time intervals.  The data collection, collation and analyses will be subject to the appropriate data governance and privacy requirements in compliance with European GDPR. This will eliminate some of the obstacles that currently exist for researchers to ensure more efficient research into ALS in Europe.

Leader: Prof. Vincent Wade, Anthony Bolger