Rare Disease Report
Patients & Caregivers

A New App for the Rare Disease Community

JANUARY 24, 2013
RDR Staff

A little over a year ago, a chemist wanting to improve the way we share information in the rare disease community asked a programmer friend to help him develop something for a ‘Shark Tank’ like event at an R&D conference. The end product was an app that may change the way we do research. Rare Disease Report had the privilege of talking with Dr’s. Sean Ekins and Alex Clark, founders of the iPhone / iPad app – ODDT (Open Drug Discovery Teams). Below is our Q&A with Sean and Alex as they explain the origins of their app and its applications.

RDR: The idea for your app began with an iPad sketch and a challenge. Can you describe the roots of the project and your experience in the Dragon’s Den? 

Sean and Alex: The Pistoia Alliance had an ice breaker event for one of their board meetings. They wanted a few volunteers to come up with ideas for new external R&D service that would revolutionize Pharma R&D by 2015. Sean had previously met with Jill Woods, a Patient Advocate for Sanfilippo disease  (Jonah’s Just Begun) at Partnering for Cures in 2011 and had also attended Science Online 2012 so he had the seed of the idea about pulling information on rare diseases together so that parents and researchers could connect. And he wanted to ease the information overload he experiences trying to collect data and foster more collaboration and open science. This led to sketching ideas on the iPad for what was initially called open drug discovery dream teams. Sean sent the slides to a few people, including Alex Clark and Antony Williams who responded with encouragement. Alex then put a prototype together to demo at the meeting a few weeks later. The project developed over 2012: first we had alpha testers, then we launched a few months later and made posters, gave talks at conferences, and even published a paper on the app. We have also submitted an SBIR grant to the NIH to develop it further.

Who is the ODDT app for?

Initially the app was for Sean to organize all the collaborations and information on diseases so that the parents, patient advocates, and researchers that he was working with could communicate with one another in an open environment.  Today, the app is for anyone interested in the topics we have selected (eg, Sanfilippo, Huntington’s, tuberculosis etc). Also, you don't have be a practicing scientist to find it useful. There are many of people who need to learn everything there is to know about a particular disease. We can help by assembling information in one place, and ideally bring people together too, both scientists and non-scientists.

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Can you describe what the app does?

The app pulls together Twitter data based on specific hashtags, and RSS news syndication feeds. Users can contribute data by tweeting out links and using specific hash tags. Most of the data fetching is done automatically - which means that a significant amount of irrelevant content comes in. From there, we rely on users to endorse the content that is relevant for each topic; so that it is retained instead of eventually deleted. Over time, this "crowd curation" results in a reference data collection of ever increasing value. In other words, the cream of the information rises to the top.

The app is also chemistry aware. That means it can handle molecule structures and data, so when somebody tweets a molecular structure for a topic, you can view it in the app, and make use of the data for various purposes. Anyone can tweet links to papers, blogs, posters, slides, etc. Alex has developed many apps around chemistry so that is a strength: an open collaborative tool for sharing information because data can be reused for other purposes, besides just displaying on the screen.

Can a non chemist use the app?

Absolutely, it was targeted to be as easy to use as Flipboard (another mobile app that integrates Facebook, Twitter and news feeds in a magazine format), so there is a low barrier to entry, and it is easy to navigate through pages and select items of interest. Some of the articles may be impenetrable to anyone other than an expert, but most of the topics capture many articles written for a general audience, so there is a wide selection.

What will following groups get out of the app?

Patient advocates: They will get a way to connect with other people following a disease (e.g. Huntington’s disease, Sanfilippo syndrome, Hunter syndrome, Giant Axonal Neuropathy, Hereditary Neuropathy Foundation, Global Genes etc.) Many rare diseases are too obscure to have their own definitive repositories of relevant information, and those with friends or relatives affected by a rare disease are in a race against time to learn all that they can and try to find a treatment. This project makes use of the social web for its source material and since it operates in real-time, it tends to be up to date.

Pharmaceutical researchers: They have a place to share ideas, collaborate, put hypotheses out there and reach out to the community. More and more of the parents and patient advocates are raising money and funding researchers, so if the researchers show their work it can lead to funding opportunities. Obviously researchers need patients for clinical trials so the app might also be a good way to find clinical trial volunteers. Researchers working to cure rare diseases are seldom blessed with large budgets, and so there is a great deal of incentive to collaborate.

Medical professionals: The app is another way for them to stay on top of the cutting edge research – many times researchers tweet links to their papers and increasingly their blogs. It can also include relevant information from recent conferences that would be of interest to them.


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What rare diseases or rare disease communities are currently included in the app?

Sanfilippo syndrome, Hunter syndrome, giant axonal neuropathy, Hereditary Neuropathy Foundation, Huntington’s disease and Global Genes Project.  We intend to add a lot more as the community grows.

Where do you see the ODDT app in two years?

That’s hard to say, the app is not even a year old. We have some parents who use it regularly, especially those that are frequent tweeters. We have lots of ideas of what could be added so that people could select rare diseases and customize the app but we need more funding to do that. The app is free, it's been a hobby project of sorts but a real showcase. We hope to demonstrate more open drug discovery and focus on rare diseases. We are trying to engage drug repurposing efforts towards rare diseases too and educate the world. At the same time, we are working on the nuts'n'bolts that go on behind the scenes, so that the information about chemistry is extracted and understood, and can be fed into computational screening efforts that early stage drug designers use to come up with new drug ideas. So it will be the Flipboard app for rare diseases, as well as a powerful tool for researchers.

Also, we need to remember that ODDT was developed to help people have more ideas, so what the app will look like in two years will be largely based on how many ideas it creates. 

The app is currently in beta testing. What groups are you most keen on getting to use your app?

Basically anyone that will see value in cross-fertilizing ideas from one disease to another will benefit. Also, by having topics next to each other it is easy for people to see something in Huntington’s disease and say ‘perhaps we should try that in giant axonal neuropathy’. Kind of a neural collaboration with itself, the user sees ideas and builds connections or inferences. We are fascinated by how we could seed idea generation.

The app has also been well received by advocates of open access, because it showcases some of the ideas that become practical once knowledge gets unlocked and made available via the open web to anyone who wants it.


sean.jpgSean Ekins is a scientist who works from Collaborations in Chemistry as well as blogs and tweets as CollabChem. He works collaboratively with other scientists all over the world on drug discovery, computational approaches for toxicology, tools for collaboration, mobile apps for science (Green Solvents, Open Drug Discovery Teams, TB Mobile). He is adjunct faculty at 3 US universities (UNC Chapel Hill, University of Maryland and UMDNJ) and on the board of several companies and organizations such as the Pistoia Alliance. He is currently focused on neglected disease research as well as how we can do drug discovery for rare diseases openly. He is dedicated to finding cures for rare diseases. The rest of his time is spent writing SBIR and STTR grants so that groups he works with can develop their ideas further. He appreciates a good beer with his friends and reading to his two young children.


alex.jpgAlex Clark is the founder of Molecular Materials Informatics, an upstart company that seeks to modernize the cheminformatics industry, by improving the ways that scientists use digital representations of chemical structures to assist their research. This includes predicting which drugs are likely to cure diseases, and calculating properties for potential materials. The company focuses on building software for mobile devices and cloud-based servers, both of which are emerging technologies that are in the process of transforming computing as we know it. So far he has produced more than a dozen ground breaking apps that bring chemistry to mobile platforms, including iPhones, iPads and Android devices. When not busy engaging with collaborators to come up with new ways to disrupt the chemical software industry, he makes use of his previous laboratory experience by brewing beer.


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