Project Scope Create a guidance for patient foundations and for researchers. Guidance can be done as a white paper, or in other formats such as - graphics, short printable materials and videos. It is also important to discuss how to market any materials we create. Project Statement As patients are playing a greater role in research, especially in rare diseases, many patient foundations are running patient registries themselves, with the goal of advancing clinical trials and research. Often, there are not enough resources or expertise to correctly create surveys, choose the most optimal registry platform, or analyze the data. As a result, a lot of data collected is poor quality or is never analyzed or used. Additionally, data collected in different patient registries can't be combined due to lack of data standardsThe 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 | |
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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) |
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Project approved Q3 2022. |
Project Members | Organisation |
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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 |