"Selfie" Videos: A Novel, Patient-centered, Comprehensive Approach to Measuring Function in MS

NCT07222618 | Recruiting

• 1 other identifier: 21-33227
• Study Type: observational
• Target: 300
• Locations: 1 country
• Sites: 1

Brief Summary

The goal of this observational study is to validate a novel, cost-effective method for real-world assessment using patient-acquired "selfie" videos in people with multiple sclerosis. The investigators aim to prove the feasibility and validity of monitoring walking changes remotely through a truly patient-centered, low-burden, low-cost approach. The main question this study aims to answer is: do remotely collected walking and speech videos from a mobile phone match the information investigators can gather from an in person visit? Participants will collect 5 "selfie" videos at baseline, 3 months, 6 months and 12 months (about 15 minutes every 3 months). They will also come in person at baseline, 6 months, and 12 months for in person data collection (about 1 hour per in person visit).

Conditions

Multiple Sclerosis; Multiple Sclerosis (MS) - Relapsing-remitting; Multiple Sclerosis (MS) Primary Progressive; MS (Multiple Sclerosis); MS; Multiple Sclerosis (MS) Secondary Progressive

Keywords

multiple sclerosis; MS; digital tool; UCSF

Outcome Measures

Primary Outcomes (1)

• Validate key metrics derived from video "selfies" against the MS Functional Composite (MSFC)

  The investigators will optimize key metrics until they show at least 0.75 correlation coefficient with MSFC z scores, as well as individual domains (walking speed/Timed 25 foot walk, processing speed/Symbol digit modalities test, dexterity/9 hole peg test).

  1 year

Secondary Outcomes (3)

• Video acquisition protocol usability

  1 year

• Refine single-domain and composite video metrics

  1 year

• Validate video metrics' sensitivity to subtle changes over time.

  1 year

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: No
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

A diverse population of adults with MS

You may qualify if:

• Any patient with MS who is above the age of 18 yrs. Participants who are unable to consent for themselves must have a surrogate decision maker or LAR.
• Age \> 18 yrs, EDSS - \<6.5, own a video recording device (smartphone, tablet, camera etc).

You may not qualify if:

• Patient unwilling to participate in the study. Participants unable to consent for themselves who do not have a surrogate decision maker or LAR.

Sponsors & Collaborators

• University of California, San Francisco: lead
• Genentech, Inc.: collaborator

Study Sites (1)

University of California, San Francisco

San Francisco, California, 94158, United States

RECRUITING

Related Publications (2)

• Nylander A, Sisodia N, Henderson K, Wijangco J, Koshal K, Poole S, Dias M, Linz N, Troger J, Konig A, Hayward-Koennecke H, Pedotti R, Brown E, Halabi C, Staffaroni A, Bove R. From "invisible" to "audible": Features extracted during simple speech tasks classify patient-reported fatigue in multiple sclerosis. Mult Scler. 2025 Feb;31(2):231-241. doi: 10.1177/13524585241303855. Epub 2024 Dec 17.

  PMID: 39690923 BACKGROUND

• Gopal A, Torres WO, Winawer I, Poole S, Balan A, Stuart HS, Fritz NE, Gelfand JM, Allen DD, Bove R. "Self-care selfies": Patient-uploaded videos capture meaningful changes in dexterity over 6 months. Ann Clin Transl Neurol. 2023 Dec;10(12):2394-2406. doi: 10.1002/acn3.51928. Epub 2023 Oct 25.

  PMID: 37877622 BACKGROUND

MeSH Terms

Conditions

Multiple Sclerosis; Multiple Sclerosis, Relapsing-Remitting; Multiple Sclerosis, Chronic Progressive

Condition Hierarchy (Ancestors)

Demyelinating Autoimmune Diseases, CNS; Autoimmune Diseases of the Nervous System; Nervous System Diseases; Demyelinating Diseases; Autoimmune Diseases; Immune System Diseases; Chronic Disease; Disease Attributes; Pathologic Processes; Pathological Conditions, Signs and Symptoms

Study Officials

• Riley Bove, MD

  University of California, San Francisco

  PRINCIPAL INVESTIGATOR

Central Study Contacts

Kyra Henderson, Study Coordinator

CONTACT

415-353-8053; kyra.henderson@ucsf.edu

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: PROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: October 27, 2025
• First Posted: October 30, 2025
• Study Start: October 1, 2025
• Primary Completion (Estimated): October 1, 2028
• Study Completion (Estimated): October 1, 2028
• Last Updated: October 31, 2025

Record last verified: 2025-10

Data Sharing

• IPD Sharing: Will not share

Locations

US (1)