Epidemiological Study in FRONtoTemporal Dementia (EFRONT)

April 7, 2026 updated by: CENTOGENE GmbH Rostock
An international, multicenter, epidemiological observational study aims to investigate the prevalence of genetic etiologies in patients diagnosed with FTD or clinically suspected for FTD.

Study Overview

Status

Status

Indicates the current recruitment status or the expanded access status.
Completed

Conditions

Conditions

The disease, disorder, syndrome, illness, or injury that is being studied. On ClinicalTrials.gov, conditions may also include other health-related issues, such as lifespan, quality of life, and health risks.

Intervention / Treatment

Intervention / Treatment

A process or action that is the focus of a clinical study. Interventions include drugs, medical devices, procedures, vaccines, and other products that are either investigational or already available. Interventions can also include noninvasive approaches, such as education or modifying diet and exercise.

Detailed Description

Frontotemporal dementia (FTD) is a genetically and pathologically heterogeneous neurodegenerative disease caused by the loss or damage of nerve cells in the brain's frontal and temporal lobes. This leads to abnormalities in behaviour, personality, and language comprehension problems. Also, people with FTD show movement disorders like tremor, rigidity, difficulty in coordination, muscle spasms and weakness. FTD's etiology is sporadic or heritable. Sixty to 70% of FTD cases are sporadic, while 30 to 40% are inherited (familial aggregation). For this study, blood samples were collected from clinically diagnosed or suspected FTD patients and were analysed for a broad range of pathogenic variants in genes associated with FTD. The scientific insights acquired from this study will help identify novel therapeutic targets and develop/ investigate potential disease-modifying drugs.

Study Type

Study Type

Describes the nature of a clinical study. Study types include interventional studies (also called clinical trials), observational studies (including patient registries), and expanded access.
Observational

Enrollment (Actual)

Enrollment

The number of participants in a clinical study. The "anticipated" enrollment is the target number of participants that the researchers need for the study.
2287

Contacts and Locations

This section provides the contact details for those conducting the study, and information on where this study is being conducted.

Study Contact

Study Contact

The name and contact information for the person who can answer enrollment questions for a clinical study. Each location where the study is being conducted may also have a specific contact, who may be better able to answer those questions.

Study Locations

  • Belgium
      • Liège, Belgium, 4000
        • CHU de Liege
    • West Flanders
      • Ostend, West Flanders, Belgium, 8400
        • AZ Damiaan
  • Germany
      • Aachen, Germany, 52074
        • RWTH Aachen University
      • Bad Homburg, Germany, 61352
        • Hochtaunus-Kliniken gGmbH
      • Berlin, Germany, 12200
        • AGZ of Charite Universitätsmedizin Berlin
      • Cologne, Germany, 50937
        • University Hospital Cologne
      • Hamburg, Germany, 22419
        • Asklepios Klinik Nord - Ochsenzoll
      • Rostock, Germany, 18057
        • University Hospital Rostock
    • Hesse
      • Hanau, Hesse, Germany, 63450
        • Hanau Hospital
      • Leun, Hesse, Germany, 35638
        • Gertrudis Klinik
    • Saxony
      • Dresden, Saxony, Germany, 01307
        • University Hospital Dresden
    • Schleswig-Holstein
      • Hamburg, Schleswig-Holstein, Germany, 20246
        • University Medical Center Hamburg Eppendorf
      • Lübeck, Schleswig-Holstein, Germany, 23562
        • University of Lubeck
  • Greece
      • Athens, Greece, 16675
        • Mediterraneo Hospital
      • Ioannina, Greece, 45110
        • University of Ioannina
  • Italy
      • Chieti, Italy, 66100
        • Università degli studi Gabriele D'Annunzio Chieti-Pescara
      • Naples, Italy, 80131
        • Azienda Ospedaliera Universitaria Federico II di Napoli
      • Parma, Italy, 43126
        • Azienda Ospedaliero-Universitaria di Parma
      • Reggio Emilia, Italy, 42121
        • Azienda USL-IRCCS of Reggio Emilia
  • Portugal
      • Almada, Portugal, 2805-267
        • Hospital Garcia de Orta
      • Coimbra, Portugal, 3000-606
        • Unidade Psiquiatrica Privada de Coimbra
      • Guimarães, Portugal, 4835-044
        • Hospital Da Senhora Da Oliveira Guimarăes
      • Loures, Portugal, 2674-514
        • Hospital Beatriz Angelo
      • Matosinhos Municipality, Portugal, 4464-513
        • Hospital Pedro Hispano
      • Torres Vedras, Portugal, 2560-280
        • CNS - campus neurológico Torres Vedras
  • Spain
      • Barcelona, Spain, 08035
        • Hospital Universitari Vall d´Hebron
      • Madrid, Spain, 28040
        • Hospital Clinico San Carlos
      • Madrid, Spain, 28041
        • Hospital Universitario 12 de Octubre
      • Madrid, Spain, 28006
        • Universitary Hospital La Princesa
      • Pamplona, Spain, 31008
        • Clinica Universidad de Navarra
      • Santander, Spain, 39011
        • Marques de Valdecilla University Hospital
  • Turkey (Türkiye)
      • Ankara, Turkey (Türkiye), 06100
        • Hacettepe University
      • Ankara, Turkey (Türkiye), 06100
        • Baskent University
      • Istanbul, Turkey (Türkiye), 34010
        • Koc University Hospital
      • Istanbul, Turkey (Türkiye), 34093
        • Bezmialem Vakif University
      • Istanbul, Turkey (Türkiye), 34080
        • Istanbul University
      • Izmir, Turkey (Türkiye), 35575
        • Izmir Economy University Medikalpark Hospital

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Eligibility Criteria

Eligibility Criteria

The key requirements that people who want to participate in a clinical study must meet or the characteristics they must have. Eligibility criteria consist of both inclusion criteria (which are required for a person to participate in the study) and exclusion criteria (which prevent a person from participating). Types of eligibility criteria include whether a study accepts healthy volunteers, has age or age group requirements, or is limited by sex.

Ages Eligible for Study

25 years to 85 years (Adult, Older Adult)

Accepts Healthy Volunteers

Yes

Sampling Method

Non-Probability Sample

Study Population

Participants diagnosed with Frontotemporal Dementia (FTD) and participants clinically suspected for FTD

Description

Inclusion Criteria:

  • Informed consent, which includes reference to the genetic testing, is obtained from the participant/legal guardian
  • The participant is aged between 25 to 85 years
  • The participant is diagnosed with Frontotemporal dementia (FTD) or has signs or symptoms of FTD

Study Plan

This section provides details of the study plan, including how the study is designed and what the study is measuring.

How is the study designed?

Design Details

  • Observational Models: Case-Only
  • Time Perspectives: Prospective

Cohorts and Interventions

Group / Cohort

Group / Cohort

A group or subgroup of participants in an observational study that is assessed for biomedical or health outcomes.
Intervention / Treatment

Intervention / Treatment

A process or action that is the focus of a clinical study. Interventions include drugs, medical devices, procedures, vaccines, and other products that are either investigational or already available. Interventions can also include noninvasive approaches, such as education or modifying diet and exercise.
Participants diagnosed with Frontotemporal Dementia
Diagnostic test: Genetic Screening
Blood samples will be collected from clinically diagnosed or suspected FTD patients and will be analysed for a broad range of pathogenic variants in genes associated with FTD.

What is the study measuring?

Primary Outcome Measures

Primary Outcome Measures

In a clinical study's protocol, the planned outcome measure that is the most important for evaluating the effect of an intervention/treatment. Most clinical studies have one primary outcome measure, but some have more than one.
Outcome Measure
Time Frame
To investigate the prevalence of genetic etiologies in FTD by genotyping FTD participants/ FTD suspected participants
Time Frame: 15 months
15 months

Collaborators and Investigators

This is where you will find people and organizations involved with this study.

Sponsor

Sponsor

The organization or person who initiates the study and who has authority and control over the study.
CENTOGENE GmbH Rostock

Investigators

Investigators

A researcher involved in a clinical study. Related terms include site principal investigator, site sub-investigator, study chair, study director, and study principal investigator.
  • Principal Investigator: Peter Bauer, Ph.D, CENTOGENE GmbH

Study record dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Major Dates

Study Start (Actual)

Study Start

The actual date on which the first participant was enrolled in a clinical study. The "anticipated" study start date is the date that the researchers think will be the study start date.
September 1, 2021

Primary Completion (Actual)

Primary Completion

The date on which the last participant in a clinical study was examined or received an intervention to collect final data for the primary outcome measure. Whether the clinical study ended according to the protocol or was terminated does not affect this date. For clinical studies with more than one primary outcome measure with different completion dates, this term refers to the date on which data collection is completed for all the primary outcome measures. The "anticipated" primary completion date is the date that the researchers think will be the primary completion date for the study.
January 9, 2024

Study Completion (Actual)

Study Completion

The date on which the last participant in a clinical study was examined or received an intervention/treatment to collect final data for the primary outcome measures, secondary outcome measures, and adverse events (that is, the last participant's last visit). The "anticipated" study completion date is the date that the researchers think will be the study completion date.
January 9, 2024

Study Registration Dates

First Submitted

First Submitted

The date on which the study sponsor or investigator first submitted a study record to ClinicalTrials.gov. There is typically a delay of a few days between the first submitted date and the record's availability on ClinicalTrials.gov (the first posted date).
September 30, 2021

First Submitted That Met QC Criteria

First Submitted That Met QC Criteria

The date on which the study sponsor or investigator first submits a study record that is consistent with National Library of Medicine (NLM) quality control (QC) review criteria. The sponsor or investigator may need to revise and submit a study record one or more times before NLM's QC review criteria are met. It is the responsibility of the sponsor or investigator to ensure that the study record is consistent with the NLM QC review criteria.
September 30, 2021

First Posted (Actual)

First Posted

The date on which the study record was first available on ClinicalTrials.gov after National Library of Medicine (NLM) quality control (QC) review has concluded. There is typically a delay of a few days between the date the study sponsor or investigator submitted the study record and the first posted date.
October 12, 2021

Study Record Updates

Last Update Posted (Actual)

Last Update Posted

The most recent date on which changes to a study record were made available on ClinicalTrials.gov. There may be a delay between when the changes were submitted to ClinicalTrials.gov by the study's sponsor or investigator (the last update submitted date) and the last update posted date.
April 9, 2026

Last Update Submitted That Met QC Criteria

Last Update Submitted That Met QC Criteria

The most recent date on which the study sponsor or investigator submitted changes to a study record that are consistent with National Library of Medicine (NLM) quality control (QC) review criteria. It is the responsibility of the sponsor or investigator to ensure that the study record is consistent with the NLM QC review criteria.
April 7, 2026

Last Verified

Last Verified

The most recent date on which the study sponsor or investigator confirmed the information about a clinical study on ClinicalTrials.gov as accurate and current. If a study with a recruitment status of recruiting; not yet recruiting; or active, not recruiting has not been confirmed within the past 2 years, the study's recruitment status is shown as unknown.
April 1, 2026

More Information

Terms related to this study

Additional Relevant MeSH Terms

Other Study ID Numbers

Other Study ID Numbers

Identifiers or ID numbers other than the NCT number that are assigned to a clinical study by the study's sponsor, funders, or others. These numbers may include unique identifiers from other trial registries and National Institutes of Health grant numbers.
  • EFRONT 05-2021

Drug and device information, study documents

Studies a U.S. FDA-regulated drug product

No

Studies a U.S. FDA-regulated device product

No

This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.

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