Free health data collection app now available to Huntington’s patients

Folio Health app aims to help record patients' day-to-day experiences

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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Folia Health is expanding the use of its patient-centered Folia app, designed to collect and manage patient-reported health data, to people with Huntington’s disease (HD).

The free app lets patients with certain conditions — now including known or suspected Huntington’s — to record and visualize information about their day-to-day experiences living with the disease. The aim is to better track disease progression, and an individual’s treatment response.

Two autoimmune disorders, multiple sclerosis (MS) and myasthenia gravis (MG), also are now included with Huntington’s disease among the more than 600 conditions tracked on Folia.

“The positive feedback we’ve received from our existing users underscores the transformative potential of enabling people to capture their own home-reported outcomes as actionable insights,” Nell Meosky Luo, CEO and founder of Folia, said in a company press release.

“We’re excited to expand our work to harness the power of the observations that people make when living with MS, MG, and HD,” Luo added.

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Folia Health app may help better track disease progression in Huntington’s

The customizable Folia app aims to equip patients with an easy resource to help them track and visualize their healthcare journey. There is a daily journal as well as tools that can be used to record symptoms, treatments, doctor appointments, and other relevant healthcare factors.

According to Folia, having all these tools in one place can make it easier for patients to organize their care and discuss it with their healthcare providers.

Users can choose to provide their data to add to research on their disease, with potential financial compensation of $48 per year if certain conditions are met. In such cases, the data will be anonymized, meaning that any information which could be used to identify patients will be removed. Individuals using this program also can quality for external studies.

The positive feedback we’ve received from … users underscores the transformative potential of enabling people to capture their own home-reported outcomes as actionable insights.

“As we continue to build these user cohorts [groups], Folia Health looks forward to opportunities to conduct observational research studies in MS, MG, and HD,” said Connie Zhang, director of research programs at Folia.

“We believe in the power of collaboration to drive meaningful change in these complex conditions,” Zhang added.

Combining collected data via Folia with other real-world findings can help provide a better picture of these diseases, as well as more tailored therapies, according to the company.

Folia also can be used by people without an official diagnosis, helping them to track their symptoms and easily show them and their progression over time to a doctor in their diagnostic process.

The new app can be downloaded on the Apple App Store or on Google Play. A desktop version also is available.