Best Data Practices for Rare Disease Patient Foundations and Researchers

This project aims to create a guidance about best data practices for patient foundations and for researchers in the form of decision trees, graphics, short printable materials or videos.

The purpose of this Working Group is to create awareness and education about best practices for collecting regulatory quality data from the industry perspective, improving data quality, empowering patients and patient groups with knowledge and information, and building bridges between industry, academics and patient communities.

This project will create greater partnership between industry, researchers and the patient community. It will also help improve data collection, with the goal of the data being useful to the industry.