Who may be eligible for the Diagnosing Frontotemporal Lobar Degeneration trial?

Inclusion Criteria: * Participant must have a reliable study partner who can provide an independent evaluation of functioning. * Able to read, understand and speak English for neuropsychological testing. * All subjects must meet one of these diagnostic criteria (A) probable behavioral variant FTD, (B) MRI-supported non-fluent variant PPA; (C) MRI-supported semantic variant PPA and \[18F\]T807 negative (D) probable CBS: using current criteria for CBS(27); (E) PSP: inclusion criteria for PSP are based upon the National Institute of Neurological Disorders and Stroke Society of Progressive Supranuclear Palsy (NINDS-SPSP) (F) FTD-MND * Control subjects must have a normal neurological exam, a CDR sum of boxes = 0, and MMSE score equal to or greater than 28 Exclusion Criteria: * Patients with clinical, imaging or CSF A beta/ tau profile consistent with AD * History of traumatic brain injury, brain tumors, stroke or other neurological or psychiatric disorders that can explain symptoms will be excluded. * Premenopausal women will be asked to consent to a pregnancy test prior to each scan as pregnant women will be excluded from study because of potential harm to fetus from PET study. * Presence of pacemakers, aneurysm clips, artificial heart valves, ear implants, metal fragments or foreign objects in the eyes, skin or body.

ClinicalTrials.gov record NCT02964637

Diagnosing Frontotemporal Lobar Degeneration

Record copied from ClinicalTrials.gov: Oct 10, 2026AI summaries generated: Jul 27, 2026

Multimodal Assessment for Predicting Specific Pathological Substrate in Frontotemporal Lobar Degeneration

About this page. This page shows the study's official ClinicalTrials.gov record ↗, with added help to make it easier to understand. We explain medical terms, highlight key details in plain language, and suggest questions you may want to ask the study team.

The record is periodically copied from ClinicalTrials.gov and may lag behind changes. AI summaries are checked by software, not a clinician.Read moreShow less

The official record is written by the study sponsor and published on ClinicalTrials.gov. It may not always reflect the latest changes. Before making any decisions, please confirm important information with the study team and your own healthcare team.

Where you see "AI summary", AI was used to create a plain-language explanation and software checked it against the source. It has not been reviewed by a clinician, so it may contain mistakes or leave out important details.

StatusRecruitingThe study is currently enrolling participants. Only the study team can say whether a particular person can join.

Study typeObservationalA study in which researchers do not assign participants to a treatment or other intervention. They observe or measure what happens, which may include study visits, tests, questionnaires or a review of medical records.

Healthy volunteersAcceptedPeople who do not have the condition being studied who are allowed to take part. Some studies include both people with the condition and healthy volunteers; others may enrol only healthy volunteers.

Age18 years old to 90 years old

SexAll

LocationCanada

AI summaryWhat this study is about, in plain languageShow ▾Hide ▴

AI-written from the registry record, not the study's own wording. May contain errors or omissions. Check the registry text on this page and the original record ↗ before acting on it.

This observational study collects imaging, tissue, fluid, and thinking/function tests from people with clinical syndromes linked to frontotemporal lobar degeneration and from healthy control volunteers. The goal is to find which tests best predict the specific underlying brain pathology. Most assessments are done at one visit; some data (including brain autopsy when available) may be used over time.

What it is studying. Whether combinations of brain scans, skin biopsy, body fluid tests, cognitive and daily‑function assessments, and autopsy findings can identify the specific pathological causes of frontotemporal lobar degeneration.

What the researchers hope to learn. To determine which tests or combinations of tests best predict the pathological substrate behind clinical FTLD syndromes. To compare structural and functional MRI measures and PET ligand uptake across groups. To improve diagnostic methods and increase understanding of disease mechanisms for future research.

What this study is about

The study's own summary, as published on ClinicalTrials.gov. Underlined terms have a short explanation.

To establish diagnostic tools to make an accurate clinical and pathological diagnosis of patients with clinical FTLD syndromes

Interventions being studied

Being studied in this trial does not mean the treatment or procedure is approved or available for this condition.

Other: Observational Study

Eligibility

The criteria exactly as listed on ClinicalTrials.gov. Only the study team can say whether they apply to you.

Inclusion criteria

Participant must have a reliable study partner who can provide an independent evaluation of functioning.
Able to read, understand and speak English for neuropsychological testing.
All subjects must meet one of these diagnostic criteria (A) probable behavioral variant FTD, (B) MRI-supported non-fluent variant PPA; (C) MRI-supported semantic variant PPA and [18F]T807 negative (D) probable CBS: using current criteria for CBS(27); (E) PSP: inclusion criteria for PSP are based upon the National Institute of Neurological Disorders and Stroke Society of Progressive Supranuclear Palsy (NINDS-SPSP) (F) FTD-MND
Control subjects must have a normal neurological exam, a CDR sum of boxes = 0, and MMSE score equal to or greater than 28

Exclusion criteria

Patients with clinical, imaging or CSF A beta/ tau profile consistent with AD
History of traumatic brain injury, brain tumors, stroke or other neurological or psychiatric disorders that can explain symptoms will be excluded.
Premenopausal women will be asked to consent to a pregnancy test prior to each scan as pregnant women will be excluded from study because of potential harm to fetus from PET study.
Presence of pacemakers, aneurysm clips, artificial heart valves, ear implants, metal fragments or foreign objects in the eyes, skin or body.

Study description and what participation involves

The study's detailed description, as published on ClinicalTrials.gov.

Detailed description from the registry

The goal of this study is to determine the best diagnostic test for diagnosing frontotemporal lobar degeneration. To accomplish this, the current study will evaluate different tests: brain imaging, skin biopsy, body fluid samples (blood and cerebrospinal fluid), thinking abilities, everyday functioning, and brain autopsy. The study team hopes that this information can be used to guide diagnosis and further understanding of mechanism of disease in Frontotemporal Lobar Degeneration and possibly treatment in the future.

AI summaryWhat participation may involve, in plain languageShow ▾Hide ▴

AI-written from the registry record, not the study's own wording. May contain errors or omissions. Check the registry text on this page and the original record ↗ before acting on it.

Participants will have brain imaging (MRI and PET scans), provide blood and possibly cerebrospinal fluid (spinal tap), and may have a small skin biopsy. They will complete thinking tests and questionnaires about everyday functioning. Some participants may be asked to agree to brain autopsy in the event of death. Premenopausal women will be asked to have a pregnancy test before each scan.

How the study is structured. Observational, cross-sectional cohort study. People with different clinical FTLD syndromes and healthy controls are evaluated and compared using brain MRI and PET, skin biopsy, blood and cerebrospinal fluid (CSF) sampling, cognitive and functional testing, and (when available) brain autopsy.

Questions you could ask

These questions are suggestions for a conversation with the study team or your own clinician, not advice.

This is an observational study, so the study itself gives no treatment. What would taking part involve for me, and would it change my usual care?
The listed sites are in Canada. Is any of them reachable for me, and does the study help with travel?
Which of the eligibility criteria would need to be checked with tests before I could join?

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Important dates

Study start: August 2015
Primary completion: December 2026 (estimated)
Study completion: December 2026 (estimated)
Target enrollment: 100 participants (estimated)
Last updated on registry: Mar 30, 2025
Data verified: Oct 10, 2026

Sponsor and research team

The lead sponsor funds and oversees the trial. A pharmaceutical or biotech company sponsor typically means the study is testing that company's drug or device; a hospital, university, or government agency usually indicates investigator-initiated or publicly funded research.

Lead sponsor: University Health Network, Toronto
Principal investigator: Carmela Tartaglia, Principal Investigator
University Health Network, Toronto

Central study contact

If you're interested in participating, the central contact can answer general questions about the study — including eligibility requirements and how to find a recruiting site near you. Actual eligibility is determined by the site's medical team.

Cristina Salvo, BSc, MD 📞 416-507-6880 ✉ cristina.salvo@uhn.ca

Participating sites (1)

Toronto Western Hospital, University Health NetworkRecruiting
Toronto, Ontario, M5T 2S8 · Canada
- Carmela Tartaglia, MD · 416-603-5483 · carmela.tartaglia@uhn.ca

Terms used on this page · explanations by MedicalUpdates.ai

MRI: A scan that uses magnets and radio waves, not X-rays, to make detailed pictures of the inside of the body. Some implants and metal objects mean a person cannot have one.
inclusion criteria: The conditions a person must meet to be considered for the study, for example a confirmed diagnosis, an age range or a test result.
PET: A scan in which a small amount of a radioactive tracer is injected so that activity in tissues can be seen. Often combined with a CT or MRI scan.
Exclusion Criteria: The conditions that rule a person out even if they meet the inclusion criteria, for example other illnesses, certain medicines or pregnancy.
biopsy: Removal of a small piece of tissue so it can be examined under a microscope. 'Biopsy-proven' or 'histologically confirmed' means the diagnosis was confirmed by examining tissue under a microscope.

The study record on this page is reproduced from ClinicalTrials.gov, a database of the U.S. National Library of Medicine, where it was submitted by the study sponsor. MedicalUpdates.ai does not own this content, is not affiliated with or endorsed by ClinicalTrials.gov, NIH, or the U.S. Government, and does not verify the record. Plain-language notes, the glossary and the questions above are added by this site; text in the boxes marked "AI summary" was written by an AI model and may contain errors. Registry records change over time. Check the original record for the current version and discuss eligibility or participation with a qualified healthcare professional.

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