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 |
partnerships 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 Leads | |||
---|---|---|---|
Sophia Zilber | (Pfizer), Alexion AstraZeneca Rare Disease, Cure Mito Foundation | zilber@pfizer | |
Danielle Boyce | (, Johns Hopkins University | )dboyce3@jhu.edu | |
Parag Shiralkar (Sumptuous Data Sciences) | parag.shiralkar@sumptuous-ds.com | ||
Paul Howard, Amicus Therapeutics | |||
Nicola Newton, | PHUSE Project Assistant | )katie@phuse |
|
---|
Project approved Q3 2022.
Q1 2024 |
---|
|
Objectives & Deliverables | Timelines |
---|---|
Decide on a strategy to share all three resources, possibly through PHUSE Education webinars | Q2 2023 |
Published Deliverables | |
Ensuring Registry Data Relevance and Reliability for Regulatory Use | 4 April 2024 |
Myths VS Facts About Patient Registries | 18 May 2023 |
28 April 2023 | |
Patient Registry Transparency Checklist For Patient Foundations | 28 April 2023 |