Project | ScopeScope |
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 |