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Incidence and Survival Rates of Frontotemporal Lobar Degeneration: Population-Based Registry Study
Gabriele Nagel1, Raphael Simon Peter1, Zeljko Uzelac2
1Institute of Epidemiology and Medical Biometry, Ulm University, Germany.
Neurology
|February 23, 2026
Summary
This study found frontotemporal lobar degeneration (FTLD) incidence is lower than previously reported, with higher rates in men. Survival prognosis significantly varies by FTLD subtype.
Area of Science:
- Neurology
- Epidemiology
- Public Health
Background:
- Frontotemporal lobar degeneration (FTLD) presents with diverse clinical syndromes, including behavioral variant FTLD (bvFTLD), primary progressive aphasia (PPA), corticobasal syndrome (CBS), and progressive supranuclear palsy (PSP).
- Existing epidemiological data on FTLD incidence and survival rates are limited, particularly from population-based registries.
- Accurate incidence and survival data are crucial for understanding disease burden and planning healthcare resources.
Purpose of the Study:
- To determine the incidence and survival rates of FTLD in a population-based registry in Southern Germany.
- To analyze FTLD incidence and survival across different FTLD subtypes.
- To compare FTLD incidence in men versus women.
Main Methods:
- Utilized the epidemiologic ALS-FTLD registry Swabia, covering 8.4 million inhabitants.
- Calculated raw and age-standardized incidence rates and incidence rate ratios (IRR) with 95% CIs.
- Estimated median survival times for different FTLD variants using the Kaplan-Meier method.
Main Results:
- Registered 515 FTLD patients between 2015-2022; median diagnostic delay was 24.8 months.
- Overall FTLD incidence was 0.77 per 100,000 person-years, lower than prior reports. Age-standardized incidence was 0.76 per 100,000 person-years.
- bvFTLD was most common (35.9%), followed by PPA (28.5%), PSP (25.8%), and CBS (4.3%). Incidence was higher in men (IRR 1.73). Median survival was 53.6 months overall, varying by subtype (PPA: 73.1 months; bvFTD: 42.8 months; PSP/CBS: 49.5 months).
Conclusions:
- The observed FTLD incidence rate of 0.77 per 100,000 person-years is lower than many previous estimates.
- FTLD incidence is significantly higher in men than women, with distinct age-related patterns for bvFTD and PSP.
- Prognosis following diagnosis is highly dependent on the specific FTLD subtype, highlighting the need for subtype-specific research and care.
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