Hack For XDP

<style type="text/css" id="isPasted"> p.p1 {margin: 0.0px 0.0px 0.0px 0.0px; font: 13.0px 'Helvetica Neue'} p.p2 {margin: 0.0px 0.0px 0.0px 0.0px; font: 13.0px 'Helvetica Neue'; min-height: 15.0px} p.p3 {margin: 0.0px 0.0px 0.0px 0.0px; font: 13.0px 'Helvetica Neue'; min-height: 16.0px} </style><h1 id="isPasted">About the Hackathon</h1><p id="isPasted">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. &nbsp;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.</p><p><br></p><p>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&rsquo;s Disease (decreased movement), whereas others involve features of dystonia (increased movement). Although XDP itself is a rare syndrome, Parkinson&rsquo;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.</p><p><br></p><p>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.</p><p><br></p><p>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. &nbsp;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. &nbsp;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. &nbsp;But there is still much we do not know. &nbsp;The Hack for XDP is an invitation to people everywhere to join these efforts to solve this disease.</p><p><br></p><h1 id="isPasted">The Challenge</h1><p id="isPasted">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.</p><p>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.</p><p>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; &nbsp;or developing public health tools for increasing awareness of XDP. &nbsp;Successful projects will address some aspect of the key pain points currently facing the XDP community:</p><p><br></p><p id="isPasted">&bull; There is an urgent need to identify new drug candidates, given the lack of therapeutic options available for XDP patients.</p><p>&bull; More awareness of XDP is also needed, particularly among Filipino communities that may include individuals at risk for the disease.</p><p>&bull; 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.</p><p><br></p><p id="isPasted">We are looking for both coding and non-coding solutions using these challenge categories:</p><p><br></p><p id="isPasted"><u>Community-Based Solutions</u></p><p>&bull; Outline a detailed and feasible plan for engaging communities with likely concentrations of XDP individuals &nbsp;in a robust outreach campaign to promote awareness of XDP through educational programs, surveys, informational webinars, social media platforms, etc. The major objectives would be to potentially identify individuals at risk and connect them to the Center for XDP at MGH or the Sunshine Care Foundation in the Philippines.</p><p><br></p><p id="isPasted"><u>Therapeutics/Research Solutions</u></p><p>&bull; 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.</p><p>&bull; Identify opportunities for repurposing existing drugs for use in XDP with strategies for testing in XDP model systems.</p><p><br></p><p id="isPasted"><u>Data-based Solutions</u></p><p>&bull; Create a mobile device application that improves common patient problems and/or facilitates connections to care teams in the US and/or Philippines. &nbsp;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.</p><p>&bull; 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.</p><p><br></p><p id="isPasted"><strong><u>Wild Card Solution</u></strong></p><p>&bull; 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 still benefits XDP patients, researchers, &amp; clinicians? Your solution will still need to focus on improving patient usability &amp; accessibility or helping researchers &amp; clinicians in their work, but if you have an idea in mind that isn&rsquo;t listed in the other challenges, your solution is valuable to this hackathon!</p><p><br></p><hr><h1>Hackathon Timeline</h1><p><strong>Registration Opens: Thursday | April 21, 2022</strong></p><p><em>Hackathon registration officially begins!</em></p><p><strong>Hackathon Starts: Thursday | June 9, 2022</strong></p><p><br></p><p><strong><u>Webinars:</u></strong></p><p><strong>Hackathon Kick Off Webinar: Thursday | June 9 @ 6:00am PT</strong></p><p><em>Hackathon overview, Challenge review, Platform navigation, Tips on How to Win a Hack and Submit a Project/Presentation.</em></p><p><br></p><p><strong>Team Formation Webinar: Tuesday | June 14 @ 6:00am PT</strong></p><p><em>Join this webinar to form teams live</em></p><p><br></p><p><strong>Technology Deep Dive Webinar: Wednesday | June 15 @ 6:00am PT</strong></p><p><em>Technology overview and Deep Dive, Data Sets Available, API access and use cases</em></p><p><br></p><p><strong>Idea Pitch &amp; Crash Testing Webinar: Thursday | June 30 @ 6:00am PT</strong></p><p><em>Join us for a live webinar to share your project status, interact directly with mentors and get valuable feedback!</em></p><p><br></p><p><strong><u>Registration:</u></strong></p><p><strong>Registration ends: Tuesday | July 19 @ 9:00pm PT</strong></p><p><em>Individual registration for the hackathon closes at midnight.</em></p><p><br></p><p><strong>Team Submission Deadline: Tuesday | July 19 @ 9:00pm PT</strong></p><p><em>Team submission closes - all teams must register on the event platform by midnight.</em></p><p><br></p><p><strong><u>Project Deadline:</u></strong></p><p><strong>Wednesday | July 20 @ 2:00pm PT</strong></p><p><em>All final presentation videos and project submissions must be submitted. Late submissions will not be accepted.</em></p><p><br></p><p><strong><u>Post Event:</u></strong></p><p><strong>Judging: July 20 - July 27, 2022</strong></p><p><br></p><p><strong>Winners Announced: Thursday</strong><strong>&nbsp;| July 28 @ 7:00am PT</strong></p><p><em>Join the live Winners Announcement!</em></p>