ALS patient creates custom app to help research teams find cure for fatal disease

ALS Never Surrender Foundation story

Watch the video

"I'm sorry, but you have ALS."

Overview

  • Determined to transform the way ALS research teams collect patient progression data and conduct clinical trials, Citizen Developer Steph Courdin created a custom app using the FileMaker Platform.

Industry

  • Healthcare/Medical Services Non-Profit

Solutions

  • Built custom app, complete with informed consent form, to collect more than 80 data points of from each patient every day.

Benefits

  • Now, research teams around the globe can access and study big data in real time, and access exponentially richer progression data.
ALS patient creates custom app to help research teams find cure for fatal disease 1
Steph Courdin pitches his ALS research progression app, ALS eNGAGE, during a meeting in San Diego.

Steph Courdin sat back in shock, the doctor’s words ringing in his ears. His wife Stacey gripped his hand. For months, Steph had been noticing increased tremors throughout his body, but nothing had prepared him for such a devastating diagnosis.

The disease, a disorder that affects the function of nerves and muscles, is lethal. Only 20% of patients with Amyotrophic Lateral Sclerosis (ALS) survive the five-year anniversary of their diagnosis.

Steph’s mind immediately leapt forward. What would life look like in six months? A year?

Shaken, he asked about the changes he might expect to see in his speech, breathing and mobility during the coming months.

“Only time will tell,” came the doctor’s answer. “Every journey is unique. There’s really no single path for ALS.”

For Steph, the answer was both terrifying and galvanizing.

“Data is in my blood,” said Steph. “I knew there had to be a way for newly-diagnosed patients get better answers.”

ALS patient creates custom app to help research teams find cure for fatal disease 1
A research assistant from the University of California, San Diego, (UCSD) explores a beta version of the app under Steph Courdin's supervision.

A new mission

Steph began digging into information about the disease and its progression in the human body. He learned that since the early 1990’s doctors and research teams had been using a subjective survey to track disease progression. The survey, typically completed in a check-up clinic every three to four months, failed to take into account weekly or monthly intra checkup biometric progression markers.

Further, research teams had no seamless way to recruit volunteers for large-scale studies or share data from large study groups.

Spurred to action, Steph created the ALS Never Surrender Foundation to support the development of a patient centered outcomes research (PCOR) tool. He began building relationships with leading ALS researchers and advocates, and explored platforms that could support development of the research tool he envisioned.

Ultimately, Steph chose to create his custom app on the FileMaker Platform, a rapid application development platform that has been used globally by problem solvers for more than 30 years.

“When you’re dealing with a terminal illness, time is of the essence,” said Steph. “The FileMaker Platform was simple and affordable. I didn’t have to learn a new coding language to build a custom app that would work seamlessly across the iPhone, Web, Mac, and eventually Android devices.”

Steph conceptualize and executed an intuitive user experience for both patients and researchers. He also worked with student developers at Georgia Southern University to implement Xcode and ensure the app could access sensors in the iPhone device to collect key data. For example, the app uses the gyroscope to measures range of motion, while the microphone measures vocal strength. Other key biometric and telemetry markers tracked are force, stamina, gait and balance, dexterity, and voice patterns.

Within three months, the bones of the app, which captures more than 80 data points per patient on a daily basis, had been created.

”Previously, research teams typically gathered just 240 points of data per patient from diagnosis until death,” said Steph. “With ALS eNGAGE, researchers can gather exponentially more – to the tune of 116,000 data points for the same time period.”

Finally, Steph collaborated with iSolutions, a FileMaker Business Alliance (FBA) partner to ensure data would be automatically synched and stored in a central repository to create a comprehensive view of the ALS population globally.

Importantly for Healthcare research protocols, informed consent is built into ALS eNGAGE; each patient who downloads the app must test understanding and participate in a study and share his or her data.

Further ensuring patient security is a globalID that obfuscates the link between a user’s personal information and the data they are transmitting, as well as encryption for data hosted on FileMaker Server.

Because the custom app is built on the FileMaker Platform, data analytics, sorting, and reporting can be done quickly and seamlessly.

ALS patient creates custom app to help research teams find cure for fatal disease 3

Outcome

Now in beta, the app is being well received by healthcare professionals and pharmaceutical research teams who can use it to treat patients and study patient data in real time at scale.

“As a physical therapist, this type of app would be quite helpful toward giving me a snapshot of how somebody’s strength and mobility might be evolving with time,” said beta tester Catherine Pritnz, physical therapist at the University of California, San Francisco (UCSF) Medical Center. “I can [use it to] make the appropriate modifications to their treatment plan prospectively as the patient needs it.”

In the future, research teams may use machine learning to generate predictive models of ALS progression based on the app’s findings. Steph hopes that adoption of the app will mean drugs used to combat the disease may have a better chance of getting approved quickly.

“I hope what we’ve been able to create will empower patients so they don’t feel so helpless,” said Steph. “Helping people take control of an uncontrollable situation makes the hard times easier to bear.”

To learn more about the app, visit ALS eNGAGE.

To learn more about the FileMaker Platform, download your free trial. To learn how to build your first custom app, visit the Custom App Academy to watch a series of free educational video tutorials.

Close

ALS patient creates custom app to help research teams find cure for fatal disease