Join Us to Create Solutions
for a Rare Brain Disease
Submission Due July 20th, 2022
Prize Pool of $20,000
Join Us to Create Solutions for a Rare Brain Disease
Rare diseases occur in around 1 in 15 people and include at least 7,000 known human illnesses affecting an estimated 400 million individuals around the world. This hackathon focuses on a rare disease known as X-Linked Dystonia-Parkinsonism (XDP) that uniquely affects people from the Island of Panay in the Philippines. XDP is a hereditary disease that involves a progressive loss of nerve cells in brain regions that control movement, resulting in significant disability and decreased lifespan. There is currently no cure for XDP, and there is an urgent need to develop new therapeutic options.
What is XDP?
Individuals with XDP develop severe disturbances in movement that may affect their ability to walk, speak, and swallow. Some of these symptoms resemble aspects of Parkinson’s Disease (decreased movement), whereas others involve features of dystonia (increased movement). Although XDP itself is a rare syndrome, Parkinson’s Disease and other forms of dystonia are relatively common. Most people, including many healthcare providers, know very little about XDP; and for that reason, there may be Filipino individuals with XDP who have been misdiagnosed with these other, more common movement disorders. Thus strategies to promote greater awareness of XDP among Filipino communities at risk, healthcare providers, and scientists are also badly needed.
About the event
XDP patients live around the world but are likely found where Filipino communities are largest, including the Philippines (especially in the Visayan or Visayan-speaking regions), the United States (particularly in California, New York, and Hawaii) and in other countries (namely Saudi Arabia, United Arab Emirates, Canada, and Japan). Identifying these individuals and connecting them to centers that provide comprehensive care and support services, as well as opportunities to participate in research, are also important goals.
By participating in this hackathon event you will:
- Contribute to a global effort to solve a rare and fatal disease
- Engage with and receive mentorship from experts in the field
- Network with fellow professionals and students with similar interests
- Publicity of project submission/efforts
The Hack for XDP is a call for new ideas that address these critical gaps in our ability to treat and support individuals with XDP. It is brought to you by The Collaborative Center for X-Linked Dystonia-Parkinsonism (CCXDP), a global coalition of scientists, physicians and patient advocates all dedicated to finding a cure for XDP. Since 2014, CCXDP researchers have conducted groundbreaking studies that have pinpointed the genetic cause of XDP, developed new experimental models, and characterized patterns of symptoms in patients. But there is still much we do not know. The Hack for XDP is an invitation to people everywhere to join these efforts to solve this disease.
Who Should Attend?
Scientists, Researchers & Clinicians focused on:
- Movement Disorders
- Neurodegenerative Diseases
- DNA Repeat Expansion
- Retrotransposons/transposable elements
Student & Professionals experienced in:
- Computational tools for mining big datasets
- Computer science methods for developing communication tools
- Public Health and community outreach strategies
Filipino Communities including:
- Health Centers and Initiatives
- Community Organizations
- University student and alumni associations
- Patient Advocacy Groups
IT specialists specialized in:
Designers focused on:
Data Scientists specialized on:
- Data Analysis
- Machine Learning
The Hack for XDP is our call for new solutions that ultimately improve the lives of individuals with XDP. These solutions could be strategies to increase public awareness of the disease, engage with communities at risk, or better connect patient families to their care teams and/or each other.
Other solutions could be a research idea that tests a new technology, develops a potential therapy, proposes a new drug target, or identifies an opportunity to repurpose an existing drug.
We welcome digital solutions in both categories, which could involve: building a mobile app and/or web app/portal; creating computational methods for mining XDP datasets and/or predicting new drug candidates; or developing public health tools for increasing awareness of XDP. Successful projects will address some aspect of the key pain points currently facing the XDP community:
Limited drug candidates currently under investigation.
- There is an urgent need to identify new drug candidates, given the lack of therapeutic options available for XDP patients.
- More awareness of XDP is also needed, particularly among Filipino communities that may include individuals at risk for the disease.
- XDP patients living in remote locations may experience challenges in connecting to sources of current information, other affected families for mutual support, or to their care team.
XDP patients living in remote locations may experience challenges in connecting to sources of current information, other affected families for mutual support, or to their care team.
Potential/Sample Solutions for Inspiration
Community Based Solutions
- Outline a detailed and feasible plan for engaging communities in a robust outreach campaign to promote awareness of XDP through educational programs, surveys, informational webinars, potentially identify individuals at risk, etc.
- Develop new channels of awareness with rare disease -related organizations/communities to engage in research assisting XDP related communities with low resource accessibility.
- Analyze public RNA sequencing (RNAseq) datasets from XDP cellular models (provided for this challenge) to identify affected cellular pathways/targets and outline detailed strategies for testing their role in XDP pathogenesis.
- Identify opportunities for repurposing existing drugs for use in XDP with strategies for testing in XDP model systems.
- Create a mobile device application that improves common patient problems and/or facilitates connections to care teams in the US and/or Philippines. We particularly encourage portals, platforms, or applications with features that allow use in regions that are under-resourced and/or not easily accessible by WiFi or cellular service.
- Deploy an application to interactively analyze open XDP data using machine learning or other cutting edge computational methods to help guide XDP researchers and clinicians.
Wild Card Solutions
- Do you have a project in mind that incorporates aspects of the above challenge? Or do you have a project with a different use case in mind but would still benefit XDP patients, researchers, and clinicians? Your solution will still need to focus on improving patient usability/ accessibility or helping researchers and clinicians in their work, but if you have an idea in mind that isn’t listed in the other challenges, your solution is valuable to this hackathon!
Target Users of your Solution
- Public health solutions to promote outreach would connect Filipino communities/community organizations with the CCXDP clinical research team
- Communication solutions would benefit XDP patients/families and their providers
- Research ideas would target the scientific community who would be involved in moving the proposed solution forward in development
$20,000 prize pool amount USD
$ 10,000 USD
Top scoring team of the hackathon will be awarded the grand prize.
$ 5,000 USD
2nd highest scoring team of the hackathon will be awarded the 2nd prize.
$ 2,000 USD
3rd highest scoring team of the hackathon will be awarded the 3rd prize.
$ 1,000 USD
Three teams will be selected as honorable mentions and will be awarded $1,000 USD each.
Each category will be judged on a scale from 1 - 5 with a total of 25 possible points.
Is this a unique approach or new type of solution?
How seamlessly and efficiently could this solution be applied and utilized? Ability for this idea to be brought to market?
How well does the solution solve the problem? How well does this match what is asked for in the challenge statement?
What are the potential outcomes of the proposed solution, and how significantly might they transform the XDP field?
For Coding - Technical Execution:
Has the team effectively utilized the available technologies? How easy is your application to use? How advanced is the concept?
For Non-Coding - Presentation Execution:
Has the team effectively communicated the product-market fit of their product? How well does it align with the hackathon challenge statements?
Submission Requirements for Judging
- Create an individual or team project page on the hackathon platform that details your solution and lists your teammates and captures your project assets
- One slide presentation outlining details of your solution, Hypothesis and Idea/plan
- 3-5 minute video detailing your use case along with your implementation
Thursday | April 21, 2022
Thursday | June 9 @ 6:00am PT
Tuesday | June 14 @ 6:00am PT
Wednesday | June 15 @ 6:00am PT
Thursday | June 30 @ 6:00am PT
Wednesday | July 20 @ 6:00pm PT
July 20 - July 27, 2022
Thursday | July 28 @ 6:00pm PT
Hackathon Kick Off
Team Formation Webinar
Technology Deep Dive Webinar
Pitch Practice Webinar
Project Submission Deadline
Friends of the Community
- Informational videos and webinars for background information on XDP and the community
- Published RNAseq data from XDP patients that can be re-analyzed
- Computational tools developed by our partner, nFerence, that can be used to re-analyze the RNAseq data and query public databases and private datasets to identify new research leads
- Links to publicly available and relevant published papers on XDP
For more information on CCXDP and nFerence check out their websites.
Collaborative Center for XDP - Massachusetts General Hospital
nference - Powering quantum leaps in human health
The Collaborative Center for X-Linked Dystonia-Parkinsonism is an international consortium of scientists, physicians and advocates working to advance research and clinical care for people with XDP.