Evidence map›Paper›PMID 42798361›Full record

ArticleFrontiers in neurology2026

Supporting frontline staff in frontotemporal degeneration research.

Shana G Dodge, Danelle J Carter, Dahlia Kamel, Angela Lunde, Quinn Hlava, Kevin Nelson, Penny A Dacks

Abstract read
In one paragraph

Article in Frontiers in neurology, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

7 authors.

Shana G DodgeThe Association for Frontotemporal Degeneration, King of Prussia, PA, United States.
Danelle J CarterDepartment of Neurology, University of Colorado Anschutz, Aurora, CO, United States.
Dahlia KamelDepartment of Neurology, Frontotemporal Degeneration Center, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, United States.
Angela LundeDepartment of Neurology, Mayo Clinic Rochester, Rochester, MN, United States.
Quinn HlavaFTD Disorders Registry, King of Prussia, PA, United States.
Kevin NelsonDepartment of Neurology, Mayo Clinic Rochester, Rochester, MN, United States.
Penny A DacksDepartment of Neurology, University of Colorado Anschutz, Aurora, CO, United States.

Funding

Technology and Remote Assessment CoreU19AG063911 · NIA · MAYO CLINIC ROCHESTER · PI Bradley F Boeve · 2019 to 2026
$120.9M
NIA NIH HHS U19 AG063911
6 · The paper itself

Abstract

Introduction: Clinical Research Coordinators (CRCs) serve as the frontline staff for research participants in studies on frontotemporal degeneration (FTD), directly influencing participant experience. The training adequacy, job satisfaction, and retention of FTD CRCs have not been systematically examined. Methods: The Association for Frontotemporal Degeneration (AFTD) administered an anonymous cross-sectional online survey to CRCs affiliated with research networks across the USA and Canada. Results: Thirty-seven CRCs responded. Most had more than 3 years of experience, yet 62% reported encountering situations for which they felt inadequately prepared. Information on genetics, symptom management, and brain donation were identified as critical training gaps. Retention was linked to competitive pay and clear career advancement opportunities. Discussion: The findings highlight a critical need for formalized, disease-specific onboarding and emotional support systems tailored to CRCs that engage with FTD patients and families. AFTD is developing a modular training curriculum to standardize CRC competency.

Indexed as

Biomedical ResearchFrontotemporal Lobar DegenerationResearch PersonnelCanadaCross-Sectional StudiesFrontline WorkersHumansJob SatisfactionSurveys and QuestionnairesUnited Statesclinical research coordinatorsfrontotemporal degenerationneurodegenerative disease researchresearch staff surveyresearch workforce training

Identifiers

PMID42798361
PMCPMC13612334

What OpenQuestion holds

Textmetadata
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.