Folia Health expands patient data collection in MS, other conditions

Transforming research and care is the ultimate goal of effort

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by Mary Chapman |

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A patient speaks with a doctor while on a medical visit.

Health technology platform Folia Health is expanding patient-reported data collection in multiple sclerosis (MS), Huntington’s disease (HD), and myasthenia gravis (MG), a move the company hopes will lead to collaborative observational research in the complex disorders, and help transform research and care.

As part of this expansion of patient and caregiver user groups, Folia Health is developing comprehensive datasets for nuanced insight into how patients experience their condition, how the disorder progresses, and their response to treatment.

“We’re excited to expand our work to harness the power of the observations that people make when living with MS, MG, and HD,” Nell Meosky Luo, Folia Health founder and CEO, said in a company press release. “The positive feedback we’ve received from our existing users underscores the transformative potential of enabling people to capture their home-reported outcomes as actionable insights. We’re dedicated to continuing our mission by this dedicated expansion across a series of autoimmune conditions.”

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Putting the data to use

As part of the effort, the company equips patients and caregivers with a “smart” tool intended to help them participate in their own care journey.

With it, patients can capture their everyday disease-related observations using a set of tailored questions, controlling which questions they want to answer and in what style — for example, as a multiple choice or as a scale. In just a matter of weeks, the insights provided can assist in building a comprehensive database that can show trends and aid patients in advocating for themselves during their medical appointments.

Patients can securely track their symptoms, understand their treatment use behaviors, and analyze their experiences during disease flare-ups. In MS, flare-ups, or relapses, are periods of new or worsening symptoms.

About 1 million U.S. residents are estimated to have multiple sclerosis, a neurodegenerative condition caused by the immune system mistakenly targeting the protective coating around nerve fibers.

Increases in the prevalence of MS, Huntington’s, and myasthenia gravis have lent urgency to research efforts, Folia maintains, noting patient-generated data, when anonymized and aggregated, has the potential to revolutionize studies and result in more personalized treatment strategies.

By combining patient-reported insights with other real-world data from patient registries and wearable instruments, investigators can gain a more holistic view of the impact of the conditions and therapies used to treat them, Folia noted.

“As we continue to build these user cohorts, Folia Health looks forward to opportunities to conduct observational research studies in MS, MG, and HD. We believe in the power of collaboration to drive meaningful change in these complex conditions,” said Connie Zhang, Folia Health’s director of research programs.