Frontotemporal dementia (FTD), frontotemporal lobar degeneration (FTLD), progressive supranuclear palsy (PSP), primary progressive aphasia (PPA), corticobasal syndrome (CBS), Alzheimer’s Disease (AD) Frontotemporal dementia (FTD)
Conditions
Interventions
None listed
Sponsors
Eligibility
Inclusion criteria
Inclusion criteria: Age = 18 years One of the following clinical conditions or genetic statuses: Behavorial variant of FTD Phenocopy FTD Progressive supranuclear palsyCorticobasal syndromePrimary progressive aphasia Alzheimer's diseasePresymptomatic carrier of a pathogenic variant in GRN, C9orf72 or MAPT, or at 50% risk for one of these variants Known, healthy control (non-carriers)3. Full clinical and neuropsychological assessment performed. 4. Willing and able to provide written informed consent. 5. Availability of an identified informant who is willing to participate in the study.
Exclusion criteria
Exclusion criteria: Contraindications for completing any mandatory part of the study protocol Other medical or psychiatric illnesses that would interfere with completing assessments Pregnancy Diminished capacity
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| The primary study endpoint is the diagnostic accuracy of a multimodal model combining different biomarkers (e.g., imaging, fluid biomarkers) and clinical data for distinguishing FTD-TDP from FTLD-Tau. Diagnostic performance will be quantified using the area under the Receiver Operating Characteristic curve (AUC) and compared to models based on individual biomarkers. | — |
Secondary
| Measure | Time frame |
|---|---|
| The secondary endpoint is the AUC of multimodal models in differentiating between FTLD and other (non-)neurodegenerative diseases. In addition, disease progression will be evaluated and time to conversion in presymptomatic carriers will be predicted using biomarker data. The socioeconomic burden of FTD will be assessed by calculating direct and indirect costs for patients and their caregivers, expressed in euros or pounds, based on healthcare utilization, informal care, and productivity loss. In addition, this endpoint will evaluate the effect of earlier diagnosis on patient burden and caregiver outcomes. | — |
Countries
Finland, Germany, Italy, Netherlands, Spain
Contacts
Erasmus MC, Universitair Medisch Centrum Rotterdam