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Revised Self-Monitoring Scale: A potential endpoint for frontotemporal dementia clinical trials
Open accessAbstract
Objective To investigate whether the Revised Self-Monitoring Scale (RSMS), an informant measure of socioemotional sensitivity, is a potential clinical endpoint for treatment trials for patients with behavioral variant frontotemporal dementia (bvFTD). Methods We investigated whether RSMS informant ratings reflected disease severity in 475 participants (71 bvFTD mutation+, 154 bvFTD mutation−, 12 behavioral mild cognitive impairment [MCI] mutation+, 98 asymptomatic mutation+, 140 asymptomatic mutation−). In a subset of 62 patients (20 bvFTD mutation+, 35 bvFTD mutation−, 7 MCI mutation+) who had at least 2 time points of T1-weighted images available on the same 3T scanner, we examined longitudinal changes in RSMS score over time and its correspondence to progressive gray matter atrophy. Results RSMS score showed a similar pattern in mutation carriers and noncarriers, with significant drops at each stage of progression from asymptomatic to very mild, mild, moderate, and severe disease (F4,48 = 140.10, p < 0.001) and a significant slope of decline over time in patients with bvFTD (p = 0.004, 95% confidence interval [CI] −1.90 to −0.23). More rapid declines on the RSMS corresponded to faster gray matter atrophy predominantly in the salience network (SN), and RSMS score progression best predicted thalamic volume in very mild and mild disease stages of bvFTD. Higher RSMS score predicted more caregiver burden (p < 0.001, 95% CI −0.30 to −0.11). Conclusions The RSMS is sensitive to progression of both socioemotional symptoms and SN atrophy in patients with bvFTD and corresponds directly to caregiver burden. The RSMS may be useful in both neurologic practice and clinical trials aiming to treat behavioral symptoms of patients with bvFTD.
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Socioemotional sensitivity, assessed with the RSMS, showed decline over one year in sporadic and genetic bvFTD, associated with salience network atrophy and caregiver burden.
“Socioemotional sensitivity, assessed with the RSMS, showed decline over one year in sporadic and genetic bvFTD, associated to salience network atrophy and caregiver burden (Toller et al., 2020).”
From The pursuit for markers of disease progression in behavioral variant frontotemporal dementia: a scoping review to optimize outcome measures for clinical trials (2024) · cites this paper as Toller et al., 2020
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Self-citation
Metadata
- Authors
- Toller, G., Ranasinghe, K., Cobigo, Y., Staffaroni, A., Appleby, B., Brushaber, D., Coppola, G., Dickerson, B., Domoto-Reilly, K., Fields, J., Fong, J., Forsberg, L., Ghoshal, N., Graff-Radford, N., Grossman, M., Heuer, H., Hsiung, G.-Y., Huey, E., Irwin, D., Kantarci, K., Kaufer, D., Kerwin, D., Knopman, D., Kornak, J., Kramer, J., Litvan, I., Mackenzie, I., Mendez, M., Miller, B., Rademakers, R., Ramos, E., Rascovsky, K., Roberson, E., Syrjanen, J., Tartaglia, C., Weintraub, S., Boeve, B., Boxer, A., Rosen, H., Rankin, K., & the ARTFL/LEFFTDS Consortium
- Affiliations
- Northwestern University (US)
- Mayo Clinic (US)
- From the Department of Neurology (G.T., K.R., Y.C., A.S., J. Fong, H.H., J.K., J.K., B.M., A.B., H.R., K.R.), Memory and Aging Center, University of California, San Francisco; Case Western Reserve University (B.A.), Cleveland, OH; Mayo Clinic (D.B., J. Fields, L.F., N.G.-R., K.K., D. Knopman, J.S., B.B.), Rochester, MN; University of California (G.C., M.M., E.R.), Los Angeles; Department of Neurology (B.D.), Massachusetts General Hospital, Harvard Medical School, Boston; University of Washington (K...
- ORCID
- Toller, Gianina
- Ranasinghe, Kamalini
- Cobigo, Yann
- Staffaroni, Adam
- Appleby, Brian
- Brushaber, Danielle
- Coppola, Giovanni
- Dickerson, Bradford
- Fields, Julie
- Fong, Jamie
- Forsberg, Leah
- Ghoshal, Nupur
- Grossman, Murray
- Heuer, Hilary
- Hsiung, Gink-Yuek
- Huey, Edward
- Irwin, David
- Kantarci, Kejal
- Kaufer, Daniel
- Kerwin, Diana
- Knopman, David
- Kornak, John
- Kramer, Joel
- Litvan, Irene
- Mackenzie, Ian
- Mendez, Mario
- Miller, Bruce
- Rademakers, Rosa
- Ramos, Eliana
- Roberson, Erik
- Syrjanen, Jeremy
- Boxer, Adam
- Rosen, Howard
- Rankin, Katherine
- Venue
- Neurology
- Published
- 2020-06-02
- Volume
- 94
- Issue
- 22
- Pages
- e2384-e2395
- ISSN
- 0028-3878 (ISSN-L)
- 1526-632X
- PMC
- PMC7357291
- OpenAlex
- W3023139446
- Cited by
- 40
- References
- 52
- Citations by year
- 2026: 3 · 2025: 8 · 2024: 7 · 2023: 4 · 2022: 7 · 2021: 9 · 2020: 2
- FWCI
- 4.01
- Type
- journal article
- Language
- en
- Open access
- green
- www.ncbi.nlm.nih.gov
- Locations
- Neurology (publishedVersion)
- PubMed Central (publishedVersion)
- PubMed (publishedVersion)
- eScholarship (California Digital Library) (submittedVersion)
- Funders
- Schweizerischer Nationalfonds zur Förderung der Wissenschaftlichen Forschung (177667)
- National Institute on Aging (K23AG021606, R01AG029577, K23AG061253, P01AG066597, P01AG017586, RF1AG029577, K08AG058749, U01AG045390, P50AG005136, K24AG045333, R01AG038791, U19AG063911, P01AG019724, P30AG066462, P30AG062422, R01AG054519, P30AG066509, R01AG032289, P50AG023501)
- National Institute of Neurological Disorders and Stroke (U54NS092089)
- Topics
- Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
- Health Sciences › Medicine › Clinical Neurology › Amyotrophic Lateral Sclerosis Research
- Life Sciences › Neuroscience › Cellular and Molecular Neuroscience › Alzheimer's disease research and treatments
- Keywords
- behavioral variant frontotemporal dementia, informant ratings, disease progression, gray matter atrophy, salience network, thalamic volume, mutation carriers, caregiver burden, clinical trial endpoints, treatment trials
- MeSH terms
- Self-Management, Adult, Aged, Clinical Trials as Topic, Facial Expression, Female, Humans, Longitudinal Studies, Magnetic Resonance Imaging, Male, Middle Aged, Surveys and Questionnaires, Reproducibility of Results, Caregivers, Expressed Emotion, Frontotemporal Dementia
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
What counts as a claim ›How we measure confidence ›How we check this ›
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