ROADMAP Project

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:

  1. lack of a consensus of the roles that various stakeholders play (patient advocacy organizations, researchers, physicians, government, pharmaceutical companies, etc.)
  2. lack of a “roadmap” of how rare disease organizations should go about pursuing drug repurposing,
  3. 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.

Watch the below video to see project lead Ania Korsunska give a brief overview of the project at Find A Cure’s Drug Repurposing conference:

Project Goals

In this research, we seek to:
  1. To answer fundamental questions about the experience of various stakeholders (rare disease organizations, physicians, researchers, patients and loved ones) in drug repurposing.
  2. 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
  3. To build a network of RDNPs and their collaborators in order to better understand the rare disease space in general.
  4. 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.


Our Partners 

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.

 


Our Super Star Volunteers (past and present)

Meg Zuccato, Anna Nguyen, Derek Ansel, Martin Lukac, Annalise Jear, Ella Therriault, Mitav Nayak, Panchatapa Baul, Samatha Hood, Sabina Grigorian, Jacob Lowy, Justin Wong, Aloka Shah, Sydney Grisham, Yuan (Abby) Feng, Leanna Chen, Megan Shieh, Bryan Aguilar, Marcy Spiker, Rose Weathers, Katherine Fang, Veikko Toikka, Robert Parillo, Lindsay McBride, and Sara Barrett.

 


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 reach out to project lead Ania Korsunska at ania@castlemannetwork.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. 

Data Collection

  • 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

Communications 

  • 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 ania@castlemannetwork.org to express your interest! 

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