Rare Disease Space

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 standards.

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.