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 |
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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 |
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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 |
|
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Project approved Q3 2022.
Q1 2024 |
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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 |