One way to attack the mystery of ALS, the disease that slowly cripples and kills but is so far incurable and mostly untreatable, is to learn more about it — and an Israeli firm is devoting volunteer efforts to that cause.
Although it was first diagnosed over 150 years ago, the sad truth is that researchers know little about amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s Disease. “We don’t really know how and why it affects people in certain ways,” says Hagit Alon, director of science at an ALS research funding organization called Prize4Life. “Baseball player Lou Gehrig died within a year and a half of being diagnosed with ALS in 1941, and then you have people like scientist Stephen Hawking, who has survived for 50 years in more or less the same condition. We don’t know why one survived and one didn’t.”
What’s needed is more data – much more, said Alon, and to help gather it, the Israeli branch of German software giant SAP Technologies has embarked on a unique project with Prize4Life: A hackathon in which SAP volunteers will develop an app for mobile devices to enable caregivers to record and upload data on an ALS patient’s condition. With the app, caregivers will be able to immediately record how patients respond to stimuli, if there has been any deterioration in their motor or mental skills – the hallmark of ALS, as patients’ physical and mental conditions worsen gradually over time – whether certain reactions or changes are triggered by certain conditions, activities, foods, and more.
Such an app would provide a great improvement over the current situation, where there is no way to record the minute details of an ALS patient’s day, and that data could prove crucial for researchers looking for an effective treatment for ALS, said Alon. “We plan to build the world’s biggest database of information relating to ALS patients, with the intention of analyzing the information to seek out behavior correlations. The SAP hackathon participants are developing an app that will enable the recording and uploading of this data, which will be available to medical researchers and pharmaceutical companies that are working on treatments for ALS.”
Prize4Life was established in 2007, three years after Avichai Kremer, then 29, an Israeli studying at Harvard Business School, was diagnosed with ALS. Kremer and some Harvard friends decided to parlay what they had learned in one of the world’s top business programs into a business plan for a non-profit that would find a cure, or at least treatments, for ALS, and the organization awards cash prizes for promising research results. “We have funded many experiments and projects, and have the world’s largest database on ALS studies. Unfortunately, the world is still searching for a solution,” said Alon.
One reason that an effective treatment for ALS has not yet been found may be that despite all the studies, researchers still do not have enough data about the day to day activities and experiences of ALS patients. “If a patient suffers an immediate emergency because of a sudden deterioration, chances are that caregivers would not have been paying attention to what preceded it,” said Alon. “They will rush to the doctor or hospital and give an oral account of what happened, but that is unlikely to be very accurate.” ALS “reporting,” in which patients or caregivers report to doctors about what they are undergoing, is done in a very similar manner, she said. “Patients and caregivers go to the doctor once every few weeks or months and talk about their experiences, with the data recorded on paper forms, so of course a lot of details are going to be missing, since they are not going to recall most of the most useful information. In addition, that information is unavailable to researchers, since it is not included in a database.”
What’s needed is a high-tech way to report information as it happens, with details recorded for later analysis – and that’s where SAP comes in, said Adi Eshet, a SAP executive in charge of the hackathon from the company’s side of things. “We are developing the app to record ALS patient information based on the instructions given to us by Prize4Life,” she said. “It’s a matter of taking their description and goals and translating it into programming code.”
“An app like this requires a lot of programming, whether it’s in setting up and classifying the information to be included in the database, or in building a user interface that will make it easy for caregivers to enter the information,” Eshet said. “We have about 35 volunteers – programmers, user interface experts, knowledge management, and database experts – working on this app.” It’s essentially a big data app – appropriate for SAP, which builds tools to deal with big data, said Eshet — roping in as many small details about how ALS patients go about their day, and then feeding information into a huge database that scientists can mine for clues about how ALS affects patients, whether there are any correlations of improvement or deterioration with specific activities or resulting from the use of certain medicines or treatments. The app is being developed for smartphones, with caregivers inputting the information about patient behavior, and eventually it could be included in a wearable device that would record information and upload it directly, said Alon.
ALS has gotten a lot of media attention lately, thanks to the summer’s successful Ice Bucket Challenge, in which celebrities and ordinary folk doused themselves with buckets of ice water in order to raise money for ALS research. “Raising money by pouring water over yourself is a great idea for raising funds, and a lot of fun. It makes for great YouTube material,” said Eshet. “We at SAP, together with Prize4Life, decided to do something a little more serious – and we think it may even be more helpful to ALS sufferers than the Ice Bucket Challenge.”