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Project Scope

Create a guidance about best data practices for patient foundations and for researchers . Guidance can be done as a white paper, or in other formats such as - in the form of decision trees, graphics, short printable materials and or videos. It is also important to discuss how to market any materials we create. 

Project Statement 

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, academic, and patient communities.

Project Impact

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