Welcome!

Agile Computing Authors: Elizabeth White, Stackify Blog, APM Blog, Progress Blog, LeanTaaS Blog

News Feed Item

Siren Interactive Brings together Global Genes, MIT, and Bestselling Author And Geneticist to Hack a Diagnosis Tool for Rare Diseases

MIT's [email protected] Medicine Program Will Deliver Technology Platform for Global Genes™ to Provide Novel Tools to Help Physicians Speed Diagnosis of Rare Disease Patients

CHICAGO, Feb. 14, 2014 /PRNewswire-USNewswire/ -- Diagnosis is one of the most challenging problems faced by rare disease patients and caregivers. The Shire Rare Disease Impact Report found that it takes an average of 7.6 years for rare disease patients in the US to receive a proper diagnosis, with 2-3 misdiagnoses along the way. One reason is that, according to National Institutes of Health (NIH) estimates, only 500 of the 7,000 rare diseases are likely to be in a physician's repertoire for diagnosis.

Author and geneticist Sharon Moalem, MD, PhD will be part of an unprecedented collaboration to create an open source solution that will help doctors save lives at Healthcare's Grand HackFest with [email protected] Medicine at MIT on March 14-16. The hackathon is the final push that will follow more than seven years of research and investments by Dr. Moalem to develop an inexpensive facial recognition tool for genetic and congenital disorders by leveraging technology developed for the security industry. This disruptive technology may provide a way to help physicians screen for rare genetic conditions that would otherwise be missed.

"Right now the tool does only relative facial comparisons," Moalem explains. "I know it can do so much more and this hackathon will be what we need to take it to the next level—and ideally, arm doctors with crucial knowledge to help patients."

The hackathon is scheduled for March 14-16 at the Massachusetts Institute of Technology (MIT) campus in Cambridge, Massachusetts. Staged by MIT and the Kauffman Foundation, the event brings together teams of engineers, entrepreneurs, designers, patients, and healthcare professionals to develop creative solutions and innovative breakthroughs in various tracks over the course of one weekend.

"The goal is to create an environment with enough support where these teams (usually pitched by clinicians) can really dive deep into the problems in healthcare, be matched with the right innovative people who provide solutions, and then work on the solution enough to have a product to demo at the end," explains Andrea Ippolito, co-leader of MIT [email protected] Medicine.

The rare disease track of the hackathon emerged from a collaboration between Dr. Moalem and Wendy White, a rare disease caregiver and founder of Siren Interactive, a relationship marketing agency specializing in orphan drugs and rare diseases. They are partnering with the Global Genes Project, a leading rare disease patient advocacy organization, which will provide the resulting Recognyz software application to healthcare professionals.

According to White, "It's not realistic to expect physicians to be highly educated about 7000 different diseases–most of which they will never see in their practice.  I can tell you as a rare disease caregiver that leveraging technology in this way will be a huge leap forward in getting a timely and accurate diagnosis and, for some patients, more effective treatment."

Cross-functional teams will compete over the course of 3 days to refine Moalem's rare disease diagnosis software and the winning team will receive funding for their approach. Moalem is donating his Recognyz patents to Global Genes so the tool can be offered free of charge to physicians.

"We are honored to be a strategic partner in this opportunity to offer a potentially game changing new tool to physicians," commented Nicole Boice, president and founder of Global Genes. "Providing it at little or no cost for greater adoption and increased patient access is even more appealing."

For information about the rare disease hackathon, contact: Ayesha N. Khalid, MD, 1-503-789-2203.

For more facts on rare disease diagnosis, view and share Siren's infographic, Journey into the Unknown, The Search for a Rare Diagnosis.

About Sharon Moalem, MD, PhD
Sharon Moalem MD, PhD, is a physician, scientist, and inventor. He has been researching rare disorders for the last 15 years working to find novel treatments for orphan diseases. Dr. Moalem is also a NYT bestselling author and his highly anticipated third book, Inheritance: How Our Genes Change Our Lives, and Our Lives Change Our Genes, demonstrates what rare genetic conditions can teach us about our health and wellbeing.

He is also the founder of two biotechnology companies and is the recipient of 20 patents for his inventions in biotechnology and human health. Dr. Moalem's scientific work, based upon using rare conditions as a template to understand more common conditions led to the discovery of Siderocillin, a new antibiotic that specifically targets so called 'superbugs' or multiresistant microbes that have increasingly become a serious threat to our health.

His current invention, a mobile application called Recogynz, was developed to provide an accessible tool to assist healthcare practitioners in the identification of facial features that are associated with rare disorders. The desire to create a mobile medical application, that could help in the detection of rare disorders, was rooted in the desire to reduce the time to diagnosis and in so doing improve health outcomes.

http://www.sharonmoalem.com

http://www.amazon.com/Inheritance-Genes-Change-Lives-Lives/dp/1455549444/ref=tmm_hrd_title_0?ie=UTF8&qid=1390495226&sr=1-1

About Siren Interactive
Siren Interactive is a rare disease relationship marketing agency with unmatched expertise in addressing the challenges and unmet needs of patients, caregivers, and physicians dealing with rare disorders. For more than 14 years, across more than 30 different disease states, we've had 1 focus: Finding rare disease patients and connecting them to our clients' brands. As trailblazers in recognizing that patient-driven decision making is central to successful orphan drug commercialization, we are constantly innovating to meet patients and caregivers where they live. To learn more about our proprietary approaches to building trust relationships with rare disease stakeholders visit www.sireninteractive.com.

About Global Genes
Global Genes is a leading rare and genetic disease patient advocacy organization.The organization's mission is to 'Eliminate the Challenges of Rare Disease' by equipping patients to become successful advocates, and through education and empowerment, become 'activists' for their disease.  Global Genes does this through a growing portfolio of educational tools and resources, events, building out critical connections and funding innovations in science and technology that will impact patients within their lifetime.  Recognized worldwide by the Blue Denim Genes Ribbon™, Global Genes unites experts, advocates and patients of all ages to stand together in hope for treatments and cures for the estimated 7,000 rare and genetic diseases that impact approximately 30 million Americans and over 250 million people worldwide. For more information about Global Genes™, please visit the following links:

Web: http://globalgenes.org/

Facebook: https://www.facebook.com/globalgenesproject?ref=br_tf

Twitter: @GlobalGenes - https://twitter.com/GlobalGenes

About MIT [email protected] Medicine
Mentored by Entrepreneur in Residence and Senior Faculty member Zen Chu, PhD, Massachusetts Institute of Technology (MIT) [email protected] Medicine's mission is to create an ecosystem at MIT, hosting the Boston medical community and beyond to teach engineers, entrepreneurs, clinicians, and designers the skills necessary to launch disruptive healthcare businesses.  Healthcare needs Hackers—clever innovators to re-architect healthcare systems and create new products and services to impact cost and quality. Some areas of healthcare are not hackable and must prove efficacy down a traditional plodding path. However, health professionals and engineers can accelerate medical innovation across many diseases and institutions by applying techniques from high technology to healthcare. Borrowing philosophies from Silicon Valley and MIT for rapid product design, lean startup methodologies, workflow re-engineering, novel data collection, big data analysis, and info publishing can have powerful effects in healthcare.

SOURCE Global Genes

More Stories By PR Newswire

Copyright © 2007 PR Newswire. All rights reserved. Republication or redistribution of PRNewswire content is expressly prohibited without the prior written consent of PRNewswire. PRNewswire shall not be liable for any errors or delays in the content, or for any actions taken in reliance thereon.

@ThingsExpo Stories
Widespread fragmentation is stalling the growth of the IIoT and making it difficult for partners to work together. The number of software platforms, apps, hardware and connectivity standards is creating paralysis among businesses that are afraid of being locked into a solution. EdgeX Foundry is unifying the community around a common IoT edge framework and an ecosystem of interoperable components.
In his session at 21st Cloud Expo, Carl J. Levine, Senior Technical Evangelist for NS1, will objectively discuss how DNS is used to solve Digital Transformation challenges in large SaaS applications, CDNs, AdTech platforms, and other demanding use cases. Carl J. Levine is the Senior Technical Evangelist for NS1. A veteran of the Internet Infrastructure space, he has over a decade of experience with startups, networking protocols and Internet infrastructure, combined with the unique ability to it...
"MobiDev is a software development company and we do complex, custom software development for everybody from entrepreneurs to large enterprises," explained Alan Winters, U.S. Head of Business Development at MobiDev, in this SYS-CON.tv interview at 21st Cloud Expo, held Oct 31 – Nov 2, 2017, at the Santa Clara Convention Center in Santa Clara, CA.
"Space Monkey by Vivent Smart Home is a product that is a distributed cloud-based edge storage network. Vivent Smart Home, our parent company, is a smart home provider that places a lot of hard drives across homes in North America," explained JT Olds, Director of Engineering, and Brandon Crowfeather, Product Manager, at Vivint Smart Home, in this SYS-CON.tv interview at @ThingsExpo, held Oct 31 – Nov 2, 2017, at the Santa Clara Convention Center in Santa Clara, CA.
"IBM is really all in on blockchain. We take a look at sort of the history of blockchain ledger technologies. It started out with bitcoin, Ethereum, and IBM evaluated these particular blockchain technologies and found they were anonymous and permissionless and that many companies were looking for permissioned blockchain," stated René Bostic, Technical VP of the IBM Cloud Unit in North America, in this SYS-CON.tv interview at 21st Cloud Expo, held Oct 31 – Nov 2, 2017, at the Santa Clara Conventi...
"Akvelon is a software development company and we also provide consultancy services to folks who are looking to scale or accelerate their engineering roadmaps," explained Jeremiah Mothersell, Marketing Manager at Akvelon, in this SYS-CON.tv interview at 21st Cloud Expo, held Oct 31 – Nov 2, 2017, at the Santa Clara Convention Center in Santa Clara, CA.
Coca-Cola’s Google powered digital signage system lays the groundwork for a more valuable connection between Coke and its customers. Digital signs pair software with high-resolution displays so that a message can be changed instantly based on what the operator wants to communicate or sell. In their Day 3 Keynote at 21st Cloud Expo, Greg Chambers, Global Group Director, Digital Innovation, Coca-Cola, and Vidya Nagarajan, a Senior Product Manager at Google, discussed how from store operations and ...
Large industrial manufacturing organizations are adopting the agile principles of cloud software companies. The industrial manufacturing development process has not scaled over time. Now that design CAD teams are geographically distributed, centralizing their work is key. With large multi-gigabyte projects, outdated tools have stifled industrial team agility, time-to-market milestones, and impacted P&L stakeholders.
Gemini is Yahoo’s native and search advertising platform. To ensure the quality of a complex distributed system that spans multiple products and components and across various desktop websites and mobile app and web experiences – both Yahoo owned and operated and third-party syndication (supply), with complex interaction with more than a billion users and numerous advertisers globally (demand) – it becomes imperative to automate a set of end-to-end tests 24x7 to detect bugs and regression. In th...
"Cloud Academy is an enterprise training platform for the cloud, specifically public clouds. We offer guided learning experiences on AWS, Azure, Google Cloud and all the surrounding methodologies and technologies that you need to know and your teams need to know in order to leverage the full benefits of the cloud," explained Alex Brower, VP of Marketing at Cloud Academy, in this SYS-CON.tv interview at 21st Cloud Expo, held Oct 31 – Nov 2, 2017, at the Santa Clara Convention Center in Santa Clar...
"There's plenty of bandwidth out there but it's never in the right place. So what Cedexis does is uses data to work out the best pathways to get data from the origin to the person who wants to get it," explained Simon Jones, Evangelist and Head of Marketing at Cedexis, in this SYS-CON.tv interview at 21st Cloud Expo, held Oct 31 – Nov 2, 2017, at the Santa Clara Convention Center in Santa Clara, CA.
SYS-CON Events announced today that CrowdReviews.com has been named “Media Sponsor” of SYS-CON's 22nd International Cloud Expo, which will take place on June 5–7, 2018, at the Javits Center in New York City, NY. CrowdReviews.com is a transparent online platform for determining which products and services are the best based on the opinion of the crowd. The crowd consists of Internet users that have experienced products and services first-hand and have an interest in letting other potential buye...
SYS-CON Events announced today that Telecom Reseller has been named “Media Sponsor” of SYS-CON's 22nd International Cloud Expo, which will take place on June 5-7, 2018, at the Javits Center in New York, NY. Telecom Reseller reports on Unified Communications, UCaaS, BPaaS for enterprise and SMBs. They report extensively on both customer premises based solutions such as IP-PBX as well as cloud based and hosted platforms.
It is of utmost importance for the future success of WebRTC to ensure that interoperability is operational between web browsers and any WebRTC-compliant client. To be guaranteed as operational and effective, interoperability must be tested extensively by establishing WebRTC data and media connections between different web browsers running on different devices and operating systems. In his session at WebRTC Summit at @ThingsExpo, Dr. Alex Gouaillard, CEO and Founder of CoSMo Software, presented ...
WebRTC is great technology to build your own communication tools. It will be even more exciting experience it with advanced devices, such as a 360 Camera, 360 microphone, and a depth sensor camera. In his session at @ThingsExpo, Masashi Ganeko, a manager at INFOCOM Corporation, introduced two experimental projects from his team and what they learned from them. "Shotoku Tamago" uses the robot audition software HARK to track speakers in 360 video of a remote party. "Virtual Teleport" uses a multip...
A strange thing is happening along the way to the Internet of Things, namely far too many devices to work with and manage. It has become clear that we'll need much higher efficiency user experiences that can allow us to more easily and scalably work with the thousands of devices that will soon be in each of our lives. Enter the conversational interface revolution, combining bots we can literally talk with, gesture to, and even direct with our thoughts, with embedded artificial intelligence, whic...
SYS-CON Events announced today that Evatronix will exhibit at SYS-CON's 21st International Cloud Expo®, which will take place on Oct 31 – Nov 2, 2017, at the Santa Clara Convention Center in Santa Clara, CA. Evatronix SA offers comprehensive solutions in the design and implementation of electronic systems, in CAD / CAM deployment, and also is a designer and manufacturer of advanced 3D scanners for professional applications.
Leading companies, from the Global Fortune 500 to the smallest companies, are adopting hybrid cloud as the path to business advantage. Hybrid cloud depends on cloud services and on-premises infrastructure working in unison. Successful implementations require new levels of data mobility, enabled by an automated and seamless flow across on-premises and cloud resources. In his general session at 21st Cloud Expo, Greg Tevis, an IBM Storage Software Technical Strategist and Customer Solution Architec...
To get the most out of their data, successful companies are not focusing on queries and data lakes, they are actively integrating analytics into their operations with a data-first application development approach. Real-time adjustments to improve revenues, reduce costs, or mitigate risk rely on applications that minimize latency on a variety of data sources. In his session at @BigDataExpo, Jack Norris, Senior Vice President, Data and Applications at MapR Technologies, reviewed best practices to ...
An increasing number of companies are creating products that combine data with analytical capabilities. Running interactive queries on Big Data requires complex architectures to store and query data effectively, typically involving data streams, an choosing efficient file format/database and multiple independent systems that are tied together through custom-engineered pipelines. In his session at @BigDataExpo at @ThingsExpo, Tomer Levi, a senior software engineer at Intel’s Advanced Analytics gr...