Project Scope 

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.

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, academics and patient communities.

Project Impact 

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.

Project LeadsEmail

Sophia Zilber, Alexion, Cure Mito Foundation

Danielle Boyce, Johns Hopkins University
Parag Shiralkar, Sumptuous Data
Alex Pearce, PHUSE Project Assistant


Published the following resources:

  • What Patient Foundations Should Know When Starting a Patient Registry 
  • Transparency Checklist 

Finalising final resource, Myths & Facts.

Objectives & Deliverables


Decide on a strategy to share all three resources, possibly through PHUSE Education webinars Q2 2023
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