Project Scope |
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, 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. |
| Project Leads | |
|---|---|
Sophia Zilber (Pfizer) | |
Danielle Boyce (Johns Hopkins University) | dboyce3@jhu.edu |
| Parag Shiralkar (Sumptuous Data Sciences) | parag.shiralkar@sumptuous-ds.com |
| Katie Warren (PHUSE Project Assistant) |
| ||||||
|---|---|---|---|---|---|---|
Project approved Q3 2022. |
Project Members | Organisation |
|---|---|
| Andrew Mulberg | Neurogene |
| Danielle Boyce | Johns Hopkins University |
| Parag Shiralkar | Sumptuous Data Sciences |
| Paul Howard | Amicus Therapeutics |
| Samantha Robicheau | Datavant |
| Sophia Zilber | Pfizer |
| Tripti Mulberg | Syneoshealth |