Assessing Real-World Experiences On SKYCLARYS® (ARIES)
ARIES (Assessing Real-World Experiences on SKYCLARYS®) is a 3 year research study that you can complete from home. There are no in-person visits, blood draws, or physical exams. This new study is designed to unlock a clearer understanding of how SKYCLARYS® (omaveloxolone) impacts the health and daily life of individuals living with FA in real-world settings and routine care, beyond the clinical trial experience. The ARIES Study is a remote non-interventional research study that you can complete from home. The ARIES Study will only review de-identified survey answers, data from Fitbit, and your medical records produced during your regular visits to the doctor. In other words, there are no additional labs, tests, or appointments required for you to participate.
Study Link: go.pic.nc/5jd
Disclaimer: This research opportunity is not affiliated with NAF. We are sharing this information as a resource for the Ataxia community. Sharing this information does not imply endorsement by NAF.
About the Study
Eligible Ataxia Types
Friedreich Ataxia (FA) — must have been prescribed or currently be taking omaveloxolone
Type of Study
Observational Research Study
Age Range
Children and Adult 16+
Study Start Date
11/18/2025
Estimated Completion Date
04/30/2029
IRB Approval #
US-SKY-12374
Location(s)
Online study
Contact Information
PicnicHealth
hello@picnichealth.com
(415) 680-3085
Who is eligible?
We are looking for individuals aged 16 and older with a confirmed diagnosis of Friedreich’s ataxia (FA) who have been prescribed or are currently taking omaveloxolone. Participants must reside and receive care in the United States.
What does participation in the study entail?
- Medical Record Collection: PicnicHealth collects your medical records from your doctors automatically after onboarding. You can view them in your PicnicHealth account.
- Eligibility Verification: PicnicHealth checks that you qualify — including doctor-confirmed FA diagnosis, omaveloxolone prescription, age 16+, and U.S.-based care.
- Paid Surveys: Short surveys every 3 months for about 3 years to help researchers understand how FA impacts your daily life. You will be compensated for your time.
- Fitbit Activity Tracking: Free Fitbit Inspire 3 provided (yours to keep). Strongly encouraged but not required to participate.
- Free PicnicHealth Account: Access to all collected records organized into a digital timeline with tools, visualizations, and care management features. Records are yours to keep forever.
What are the potential benefits for participants?
- Contribute to deeper understanding of how omaveloxolone works in real-world settings
- Free PicnicHealth account with organized medical records
- Free Fitbit Inspire 3
- $120 upon confirmation of eligibility, plus paid surveys
- Help improve care and inform future research for the FA community
What are the potential risks for participants?
None listed
Is there financial compensation?
Yes. You’ll receive $120 upon confirmation of eligibility and additional compensation for completing surveys.
Is there travel reimbursement?
N/A — fully remote study, no travel required.
Additional Information or Resources
NAF is pleased to share information about the ARIES Study managed by PicnicHealth and sponsored by Biogen. This study is designed to better understand what life is like for people who are taking SKYCLARYS® (omaveloxolone) for Friedreich’s ataxia (FA).
How are PicnicHealth, NAF and Biogen connected?
Biogen is the pharmaceutical company manufacturing omaveloxolone, are working with PicnicHealth and Biogen to share information about the ARIES study, and both will assist individuals with patient support. PicnicHealth, in turn, is the data partner for the ARIES Study, facilitating the secure collection and de-identification of health records for Biogen’s research purposes. All three parties collaborate to ensure a smooth and compliant study process.
About PicnicHealth
PicnicHealth is a leading health technology company simplifying healthcare for everyone. Through a combination of clinical expertise and technology, PicnicHealth provides patients with their organized medical records to prepare for doctor visits and advocate for themselves. Patients can also more easily participate in observational research to advance medicine and enrich lives.
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