Welcome!

Eclipse Authors: JP Morgenthal, Yeshim Deniz, Liz McMillan, Elizabeth White, XebiaLabs 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
"We build IoT infrastructure products - when you have to integrate different devices, different systems and cloud you have to build an application to do that but we eliminate the need to build an application. Our products can integrate any device, any system, any cloud regardless of protocol," explained Peter Jung, Chief Product Officer at Pulzze Systems, in this SYS-CON.tv interview at @ThingsExpo, held November 1-3, 2016, at the Santa Clara Convention Center in Santa Clara, CA.
The cloud promises new levels of agility and cost-savings for Big Data, data warehousing and analytics. But it’s challenging to understand all the options – from IaaS and PaaS to newer services like HaaS (Hadoop as a Service) and BDaaS (Big Data as a Service). In her session at @BigDataExpo at @ThingsExpo, Hannah Smalltree, a director at Cazena, provided an educational overview of emerging “as-a-service” options for Big Data in the cloud. This is critical background for IT and data professionals...
Internet of @ThingsExpo has announced today that Chris Matthieu has been named tech chair of Internet of @ThingsExpo 2017 New York The 7th Internet of @ThingsExpo will take place on June 6-8, 2017, at the Javits Center in New York City, New York. Chris Matthieu is the co-founder and CTO of Octoblu, a revolutionary real-time IoT platform recently acquired by Citrix. Octoblu connects things, systems, people and clouds to a global mesh network allowing users to automate and control design flo...
The WebRTC Summit New York, to be held June 6-8, 2017, at the Javits Center in New York City, NY, announces that its Call for Papers is now open. Topics include all aspects of improving IT delivery by eliminating waste through automated business models leveraging cloud technologies. WebRTC Summit is co-located with 20th International Cloud Expo and @ThingsExpo. WebRTC is the future of browser-to-browser communications, and continues to make inroads into the traditional, difficult, plug-in web co...
Amazon has gradually rolled out parts of its IoT offerings, but these are just the tip of the iceberg. In addition to optimizing their backend AWS offerings, Amazon is laying the ground work to be a major force in IoT - especially in the connected home and office. In his session at @ThingsExpo, Chris Kocher, founder and managing director of Grey Heron, explained how Amazon is extending its reach to become a major force in IoT by building on its dominant cloud IoT platform, its Dash Button strat...
Complete Internet of Things (IoT) embedded device security is not just about the device but involves the entire product’s identity, data and control integrity, and services traversing the cloud. A device can no longer be looked at as an island; it is a part of a system. In fact, given the cross-domain interactions enabled by IoT it could be a part of many systems. Also, depending on where the device is deployed, for example, in the office building versus a factory floor or oil field, security ha...
In addition to all the benefits, IoT is also bringing new kind of customer experience challenges - cars that unlock themselves, thermostats turning houses into saunas and baby video monitors broadcasting over the internet. This list can only increase because while IoT services should be intuitive and simple to use, the delivery ecosystem is a myriad of potential problems as IoT explodes complexity. So finding a performance issue is like finding the proverbial needle in the haystack.
The idea of comparing data in motion (at the sensor level) to data at rest (in a Big Data server warehouse) with predictive analytics in the cloud is very appealing to the industrial IoT sector. The problem Big Data vendors have, however, is access to that data in motion at the sensor location. In his session at @ThingsExpo, Scott Allen, CMO of FreeWave, discussed how as IoT is increasingly adopted by industrial markets, there is going to be an increased demand for sensor data from the outermos...
Data is the fuel that drives the machine learning algorithmic engines and ultimately provides the business value. In his session at 20th Cloud Expo, Ed Featherston, director/senior enterprise architect at Collaborative Consulting, will discuss the key considerations around quality, volume, timeliness, and pedigree that must be dealt with in order to properly fuel that engine.
In his general session at 19th Cloud Expo, Manish Dixit, VP of Product and Engineering at Dice, discussed how Dice leverages data insights and tools to help both tech professionals and recruiters better understand how skills relate to each other and which skills are in high demand using interactive visualizations and salary indicator tools to maximize earning potential. Manish Dixit is VP of Product and Engineering at Dice. As the leader of the Product, Engineering and Data Sciences team at D...
SYS-CON Events has announced today that Roger Strukhoff has been named conference chair of Cloud Expo and @ThingsExpo 2017 New York. The 20th Cloud Expo and 7th @ThingsExpo will take place on June 6-8, 2017, at the Javits Center in New York City, NY. "The Internet of Things brings trillions of dollars of opportunity to developers and enterprise IT, no matter how you measure it," stated Roger Strukhoff. "More importantly, it leverages the power of devices and the Internet to enable us all to im...
Whether your IoT service is connecting cars, homes, appliances, wearable, cameras or other devices, one question hangs in the balance – how do you actually make money from this service? The ability to turn your IoT service into profit requires the ability to create a monetization strategy that is flexible, scalable and working for you in real-time. It must be a transparent, smoothly implemented strategy that all stakeholders – from customers to the board – will be able to understand and comprehe...
"Once customers get a year into their IoT deployments, they start to realize that they may have been shortsighted in the ways they built out their deployment and the key thing I see a lot of people looking at is - how can I take equipment data, pull it back in an IoT solution and show it in a dashboard," stated Dave McCarthy, Director of Products at Bsquare Corporation, in this SYS-CON.tv interview at @ThingsExpo, held November 1-3, 2016, at the Santa Clara Convention Center in Santa Clara, CA.
What happens when the different parts of a vehicle become smarter than the vehicle itself? As we move toward the era of smart everything, hundreds of entities in a vehicle that communicate with each other, the vehicle and external systems create a need for identity orchestration so that all entities work as a conglomerate. Much like an orchestra without a conductor, without the ability to secure, control, and connect the link between a vehicle’s head unit, devices, and systems and to manage the ...
Everyone knows that truly innovative companies learn as they go along, pushing boundaries in response to market changes and demands. What's more of a mystery is how to balance innovation on a fresh platform built from scratch with the legacy tech stack, product suite and customers that continue to serve as the business' foundation. In his General Session at 19th Cloud Expo, Michael Chambliss, Head of Engineering at ReadyTalk, discussed why and how ReadyTalk diverted from healthy revenue and mor...
As data explodes in quantity, importance and from new sources, the need for managing and protecting data residing across physical, virtual, and cloud environments grow with it. Managing data includes protecting it, indexing and classifying it for true, long-term management, compliance and E-Discovery. Commvault can ensure this with a single pane of glass solution – whether in a private cloud, a Service Provider delivered public cloud or a hybrid cloud environment – across the heterogeneous enter...
Financial Technology has become a topic of intense interest throughout the cloud developer and enterprise IT communities. Accordingly, attendees at the upcoming 20th Cloud Expo at the Javits Center in New York, June 6-8, 2017, will find fresh new content in a new track called FinTech.
You have great SaaS business app ideas. You want to turn your idea quickly into a functional and engaging proof of concept. You need to be able to modify it to meet customers' needs, and you need to deliver a complete and secure SaaS application. How could you achieve all the above and yet avoid unforeseen IT requirements that add unnecessary cost and complexity? You also want your app to be responsive in any device at any time. In his session at 19th Cloud Expo, Mark Allen, General Manager of...
The 20th International Cloud Expo has announced that its Call for Papers is open. Cloud Expo, to be held June 6-8, 2017, at the Javits Center in New York City, brings together Cloud Computing, Big Data, Internet of Things, DevOps, Containers, Microservices and WebRTC to one location. With cloud computing driving a higher percentage of enterprise IT budgets every year, it becomes increasingly important to plant your flag in this fast-expanding business opportunity. Submit your speaking proposal ...
Bert Loomis was a visionary. This general session will highlight how Bert Loomis and people like him inspire us to build great things with small inventions. In their general session at 19th Cloud Expo, Harold Hannon, Architect at IBM Bluemix, and Michael O'Neill, Strategic Business Development at Nvidia, discussed the accelerating pace of AI development and how IBM Cloud and NVIDIA are partnering to bring AI capabilities to "every day," on-demand. They also reviewed two "free infrastructure" pr...