Sage Bionetworks releases data from Parkinson’s ResearchKit study

mPower app

Nonprofit biomedical research organization Sage Bionetworks released a dataset of more than 9,500 people to help speed scientific progress toward treatments for people with Parkinson’s disease. Consisting of millions of data points collected on a nearly-continuous basis through the iPhone app mPower, the dataset will provide researchers with “unprecedented insight” into the daily changes in symptoms and effects of medication for people with Parkinson’s.

In comparison, most Parkinson’s studies conducted today rely on sporadic data from fewer than 100 users. The scale and scope of the mPower data are detailed in a paper published in Nature Scientific Data and an accompanying editorial in NPJ Parkinson’s Disease.

The mPower app, built by Sage with support from the Robert Wood Johnson Foundation, collects data on capacities affected by Parkinson’s disease, including dexterity, balance and gait, memory, and certain vocal characteristics, through tasks that rely on iPhone’s sensors. For example, to measure dexterity, participants complete a speed tapping exercise on their iPhone’s touchscreen; to evaluate speech, participants use their iPhone’s microphone to record themselves pronouncing a vowel-saying Aaaaah-for 10 seconds.

The app also allows participants to track when each task is completed alongside the time they take their medication, while also enabling participants to complete regular surveys, rating the severity of their symptoms and what they think makes them better or worse.

mPower launched in March 2015 as one of the first ResearchKit apps with the option to allow participants to choose who to share their data with. Sharing options include only those researchers associated with mPower, or qualified researchers worldwide. So far, over 75 percent of the more than 12,000 mPower participants chose to share their data broadly with researchers.

“An overwhelming number of mPower participants have chosen to donate their data to science,” Stephen Friend, MD, PhD, president of Sage Bionetworks, said in a statement. “Now science must do its part. As researchers, we must step up to the plate to make sense of all this data and translate it into real change in the lives of people suffering with Parkinson’s.”

mPower launched in March 2015 as one of the first ResearchKit apps.From a preliminary analysis of the data, Sage has found enormous variation of symptoms within individuals, which could help researchers better pinpoint windows of intervention. By opening up this data and making it available to all researchers, the organization hopes to accelerate new insights that can be implemented in the clinic and lead to improvements in the lives of people with Parkinson’s disease — insights that can only be realized with a large, open community of data scientists analyzing and re-analyzing the data.

The dataset released today represents the first six months of data donated by mPower participants. Sage intends to add new data from the mPower app on a regular basis.

Researchers can become qualified and access the Parkinson’s database via data and analysis sharing platform, Synapse.