Get help now — free helplines

You can call any of these for free. You do not need a diagnosis, an appointment, or a crisis to call — questions and plain exhaustion are reasons enough.

  • Alzheimer's Association 24/7 Helpline 800-272-3900 24 hours a day, 365 days a year Free, confidential support and information for people with dementia, caregivers, families and the public. Master's-level clinicians. Also Spanish.
  • 988 Suicide & Crisis Lifeline 988 24/7 Call or text 988, or chat at 988lifeline.org. For anyone in emotional distress or a mental-health crisis, including caregivers.
  • Alzheimer's Foundation of America (AFA) Helpline 866-232-8484 9:00 am - 9:00 pm ET, seven days a week Licensed social workers providing support, info and referrals. Also text message and web chat. Text: 646-586-5283

In a medical emergency, call 911. More numbers, and what each line does, on the help page.

The query: title or abstract mentions "frontotemporal", "FTD", "FTLD", "Pick's disease", "primary progressive aphasia", "C9orf72", "progranulin" or "GRN", matched case-insensitively against each record's title and abstract (its summary field) in alzhub's library of 29,380 study records, as of 2026-11-08. Every count on this page comes from that match. The matched list as JSON.

FTD is a group of conditions in which the frontal and temporal lobes shrink. The behavioural variant changes personality, judgement and empathy; the language variants (primary progressive aphasia) affect speech and word meaning. It is the most common dementia in people under 60, and a sizeable share is inherited, through mutations in genes such as C9orf72, GRN and MAPT. The proteins involved are tau or TDP-43, not amyloid.

This page describes what published research in alzhub's library reports. It is not medical advice and does not apply to any one person: a doctor who knows the person's history is the only one who can say what a result or a treatment means for them.

What the studies report, in their own words

Whole sentences copied from the abstract or key findings of the highest-scoring matched studies, chosen because they mention the subject and give a figure. 8 of the 1,636 matched records are quoted; each links to its study page and from there to the paper.

“Rare variant association analysis between patients and controls showed no difference over the whole protein, but suggested that rare mutations clustering in the UBA domain of SQSTM1 may influence disease susceptibility by doubling the risk for FTLD (RR = 2.18 [95 % CI 1.24-3.85]; corrected p value = 0.042).”
From the abstract of Rare mutations in SQSTM1 modify susceptibility to frontotemporal lobar degeneration · Acta neuropathologica · 2014 · meta-analysis ·
“Results A total of 27 participants (mean [SD] age, 56.6 [10.5] years; 16 women [59.3%]; 26 White participants [96.3%]) with GRN variations were randomized and completed treatment.”
From the abstract of Effect of the Histone Deacetylase Inhibitor FRM-0334 on Progranulin Levels in Patients With Progranulin Gene Haploinsufficiency: A Randomized Clinical Trial · JAMA network open · 2021 · cross-sectional ·
“In addition, the finding in the stage 1 sample that AD risk is significantly influenced by the interaction of APOE with rs1595014 in TMEM106B (P=1·6 × 10(-7)) is noteworthy, because TMEM106B variants have previously been associated with risk of frontotemporal dementia.”
From the key findings of A novel Alzheimer disease locus located near the gene encoding tau protein · Molecular psychiatry · 2016 · meta-analysis ·
“A case-control meta-analysis of all published E117G ALS+/- frontotemporal dementia cases including those identified in this report was significant p = 0.001, odds ratio = 3.26 (95% confidence interval, 1.6-6.7), demonstrating this variant to be a susceptibility allele.”
From the abstract of Novel mutations support a role for Profilin 1 in the pathogenesis of ALS · Neurobiology of aging · 2015 · meta-analysis ·
“Mutations in three genes-MAPT, GRN, and C9orf72--have been associated with FTD.”
From the key findings of Frontotemporal dementia and its subtypes: a genome-wide association study · The Lancet. Neurology · 2014 · meta-analysis ·
“Results Plasma p-tau 217 effectively distinguished AD from FTLD, with the NfL/p-tau 217 ratio showing superior accuracy.”
From the key findings of Plasma p-tau217 and neurofilament/p-tau217 ratio in differentiating Alzheimer's disease from syndromes associated with frontotemporal lobar degeneration · Alzheimer's & dementia : the journal of the Alzheimer's Association · 2025 · cohort study ·
“We confirm UNC13A as the strongest overall FTLD-TDP risk factor and identify TNIP1 as a novel FTLD-TDP risk factor.”
From the key findings of Deciphering distinct genetic risk factors for FTLD-TDP pathological subtypes via whole-genome sequencing · Nature Communications · 2025 · meta-analysis ·
“We aimed to investigate the role of p.R47H variant in AD and FTD through a multi-center study comprising 3172 AD and 682 FTD patients and 2169 healthy controls from Spain.”
From the key findings of Assessing the role of the TREM2 p.R47H variant as a risk factor for Alzheimer's disease and frontotemporal dementia · Neurobiology of aging · 2014 · meta-analysis ·

What kind of evidence it is

By study design

Design (as recorded)Studies
Systematic review or meta-analysis47
Randomised controlled trial2
Other clinical trial5
Cohort or longitudinal study108
Case-control study14
Cross-sectional study49
Other recorded design7
No design recorded1,404

The design is the one named in alzhub's record for the study; a record with none is counted as "no design recorded".

By year

YearStudiesShare
2026117
2025262
202437
202353
202271
202166
202064
201972
201869
201763
2016 and earlier762

Other counts within the matched set

Peer-reviewed articles1,598
Marked open access in the record576
Rated "high" evidence strength in alzhub's summary57
Rated "moderate" evidence strength in alzhub's summary270
Rated "low" evidence strength in alzhub's summary1,304
No evidence-strength rating5
Records stating a participant count530
Median participants (those records)95
Largest participant count1,333,424

Within the 1,636 matched studies

Studies…CountRule
…that mention a gene (C9orf72, GRN/progranulin, MAPT)313the abstract also contains "C9orf72", "progranulin", "GRN" or "MAPT"
…that mention TDP-43318the abstract also contains "TDP-43"
…that also mention Alzheimer's891the abstract also contains "Alzheimer"

The 10 highest-scoring matched studies

Title matches first, then by alzhub's usefulness score, which rates a study's design, journal, evidence and recency, not whether its result is good news.

  1. Rare mutations in SQSTM1 modify susceptibility to frontotemporal lobar degeneration Acta neuropathologica · 2014 · meta-analysis · 3,899 participants · · Peer-reviewed
  2. Effect of the Histone Deacetylase Inhibitor FRM-0334 on Progranulin Levels in Patients With Progranulin Gene Haploinsufficiency: A Randomized Clinical Trial JAMA network open · 2021 · cross-sectional · 27 participants · · Peer-reviewed
  3. Cognitive reserve in individuals with frontotemporal dementia: a systematic review Journal of clinical and experimental neuropsychology · 2024 · systematic review · 1,423 participants · · Peer-reviewed
  4. Frontotemporal dementia and its subtypes: a genome-wide association study The Lancet. Neurology · 2014 · meta-analysis · 3,526 participants · · Peer-reviewed
  5. Potential genetic modifiers of disease risk and age at onset in patients with frontotemporal lobar degeneration and GRN mutations: a genome-wide association study The Lancet. Neurology · 2018 · meta-analysis · 382 participants · · Peer-reviewed
  6. Prevalence of amyloid-β pathology in distinct variants of primary progressive aphasia Annals of neurology · 2018 · meta-analysis · 443 participants · · Peer-reviewed
  7. Reliability and Validity of Smartphone Cognitive Testing for Frontotemporal Lobar Degeneration JAMA network open · 2024 · cohort study · 258 participants · · Peer-reviewed
  8. Plasma p-tau217 and neurofilament/p-tau217 ratio in differentiating Alzheimer's disease from syndromes associated with frontotemporal lobar degeneration Alzheimer's & dementia : the journal of the Alzheimer's Association · 2025 · cohort study · 374 participants · · Peer-reviewed
  9. The role of TREM2 R47H as a risk factor for Alzheimer's disease, frontotemporal lobar degeneration, amyotrophic lateral sclerosis, and Parkinson's disease Alzheimer's & dementia : the journal of the Alzheimer's Association · 2015 · meta-analysis · 828 participants · · Peer-reviewed
  10. Deciphering distinct genetic risk factors for FTLD-TDP pathological subtypes via whole-genome sequencing Nature Communications · 2025 · meta-analysis · 985 participants · · Peer-reviewed

Systematic reviews and meta-analyses in the set

47 of the matched records are recorded as a systematic review, meta-analysis or umbrella review; the highest-scoring not already listed above:

Newest matched studies

Journals with the most matched studies

JournalStudies
Neurology98
Brain : a journal of neurology60
Acta neuropathologica56
Annals of neurology34
Alzheimer s & Dementia33

Questions

How is frontotemporal dementia different from Alzheimer's?
It tends to start earlier, often in the fifties or sixties, and the first changes are usually in behaviour, personality or language rather than memory. The proteins involved are tau or TDP-43 rather than amyloid, so amyloid tests are typically negative.
How many studies on frontotemporal dementia does alzhub hold?
1,636 of the 29,380 study records in alzhub's library match the query "title or abstract mentions "frontotemporal", "FTD", "FTLD", "Pick's disease", "primary progressive aphasia", "C9orf72", "progranulin" or "GRN""; 718 of them name it in the title. Counted from the records when this page was built.
What kinds of study are they?
47 systematic review or meta-analysis, 2 randomised controlled trials, 5 other clinical trials, 108 cohort or longitudinal studys, 14 case-control studys, 49 cross-sectional studys; 1,404 record no design.
What is the most recent study in the set?
"From group-level neurophysiological biomarkers to individual-level phenotyping to identify mechanisms of neurodegenerative disease" (bioRxiv, 2026), the newest by publication date among the matched records.
Which journals publish most on it?
Neurology (98); Brain : a journal of neurology (60); Acta neuropathologica (56), counted across the matched records.

Read on

Library subjects these studies are filed under

All answer pages →