About the Project
Today, there are no treatments for over 7,000 diseases, many of which are rare and deadly.. Since the incentives for new drug development for rare diseases are limited, drug repurposing provides a promising way to identify effective treatments for rare diseases faster and cheaper than developing new drugs. Still, many challenges exist in the drug repurposing space, namely 1) a lack of a clear roadmap of the roles that various stakeholders play (patient advocacy organizations, researchers, physicians, government, pharma, etc.) and 2) proven method of how rare disease organizations should go about pursuing drug repurposing, and a 3) lack of support (data, finances, resources, guidelines, etc.) during the drug repurposing process.
In partnership with the Chan Zuckerberg Initiative, the Repurposing Of All Drugs, Mapping All Paths (ROADMAP) project proposes to fill some of those gaps through document analysis, surveys and interviews grounded in a participatory design approach. Ultimately, this project aims to not only answer some fundamental questions about the experience of drug repurposing for various stakeholders, but to also design a solution to some of the challenges rare disease organizations are facing through the creation of an interactive tool.
The CDCN was awarded a grant from the Chan Zuckerberg Initiative, whose science program supports the science and technology that will make it possible to cure, prevent, or manage all diseases by the end of the century.
Want to Participate?
For this project, we are looking to collect data from rare disease organizations, patients, loved ones, researchers, and physicians treating rare disease patients, as well as representatives of pharma companies and government organizations.
There are varying levels of participation available to interested rare disease organizations. (Prior experience with drug repurposing not required).
Interested in contributing to our data collection?
Please reach out to project lead Ania Korsunska at firstname.lastname@example.org
Want to Volunteer?
We are looking for individuals who are interested in helping with the project in a variety of ways, depending on experience, interest and availability. We are always open to working with students, researchers, academics, etc.
- Gathering lists of rare disease organizations from various sources
- Extracting information from rare disease organizations’ websites
- Annotation and analysis of documents and resources
- Looking up drug approval labels to identify instances of drug repurposing
- Support for setting up interviews, sending pre-emails, follow up thank you’s, gaining consent
- Transcription and transcript clean up
- Creation of social media posts and graphics
- Project promotion and outreach
- Ongoing design input for iteration of final product
Literature Review & Writing
- Literature review for publications
- Report and paper writing support
Please reach out to project lead Ania Korsunska at email@example.com to express your interest!