About the Project
There are ∼7000 rare diseases affecting approximately 30,000,000 individuals in the U.S.A. and 95% of these rare diseases do not have a single Food and Drug Administration-approved therapy. 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:
- lack of a consensus of the roles that various stakeholders play (patient advocacy organizations, researchers, physicians, government, pharmaceutical companies, etc.)
- lack of a “roadmap” of how rare disease organizations should go about pursuing drug repurposing,
- lack of support (data, finances, resources, guidelines, etc.) during the drug repurposing process.
The Repurposing Of All Drugs, Mapping All Paths (ROADMAP) project proposes to fill some of these knowledge 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.
- To answer fundamental questions about the experience of various stakeholders (rare disease organizations, physicians, researchers, patients and loved ones) in drug repurposing.
- To understand the information and knowledge sharing practices of rare disease non profit organizations (RDNPs) within the rare disease space in regards to drug repurposing
- To build a network of RDNPs and their collaborators in order to better understand the rare disease space in general.
- To produce a “roadmap” for RDNPs to support the pursuit of drug repurposing.
We will utilize a combination of methods to pursue our research questions as follows: document analysis, surveys, network analysis, interviews, and participatory design sessions.
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 pharmaceutical 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 take our survey here:
We have also put together a pdf 2-pager with more information and sample social media posts for you to utilize. These can be found below:
Please reach out to project lead Ania Korsunska at firstname.lastname@example.org if you have any questions!
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!
Our Super Star Volunteers (past and present)
Meg Zuccato, Anna Nguyen, Derek Ansel, Martin Lukac, Annalise Jear, Mitav Nayak, Panchatapa Baul, Samatha Hood, Sabina Grigorian, Jacob Lowy, Justin Wong, Sydney Grisham, Yuan (Abby) Feng, Leanna Chen, Megan Shieh, Bryan Aguilar, Marcy Spiker, Rose Weathers, Katherine Fang, Veikko Toikka, Robert Parillo, Lindsay McBride, Sara Barrett, Robert Parillo, Dallas Ryan, Veikko Toikka, Benita Balogun, Robert Parillo, Penny Deremer, Miti Patel, Emma Roemer, Neda Pazuki, Erikka Chowdhury, Stephanie Hage, Matt Scott, Geetha Turlapati, and Jessica Xiang.
Special thanks to our amazing CDCN ROADMAP team: Mileva Repasky, Johnson Khor, Mary Zuccato, Dr. David Fajgenbaum, and Ania Korsunska.
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.