Original Research

Measuring Diversity in AD Research

An empirical investigation structured around the three dimensions of diversity identified in Part I, applied to Alzheimer's & Dementia(2025), the field's flagship journal.

Organising principle

The same framework that defines the problem in Part I organises this investigation. Each pillar addresses a distinct question, measured through a specific lens.

I
Geographic & Ethnic Diversity

Who is studied?

Dataset citations as a direct proxy for which populations are examined in published AD research.

II
Sex & Gender Diversity

Does the literature treat sex as a biological variable?

Proportion of papers performing sex-aware analyses rather than treating sex as a covariate.

III
Data Infrastructure & Researcher Diversity

Is the infrastructure open, and the research team diverse?

Code/data sharing rates, geographic origin of labs, and gender composition of authorship.

2025 Pipeline Run: Headline Results

Alzheimer's & Dementia (Wiley, ISSN: 1552-5260) · 913 papers manually downloaded and screened

913
PDFs analysed
manually downloaded
88.6%
Code sharing
keyword match
but only 9.4% with a real repo link
3.0%
Data sharing
27 / 913 papers
(openly accessible datasets)
25.5%
Sex-specific keywords
233 papers
4.1%
Sex-aware main focus
37 papers (keyword in title)
52.8%
Dataset mentions
482 papers cite ≥1 dataset
(datasets defined in Part II catalogue)
9.4%
Repo links extracted
86 papers (80 GitHub)
99.1%
Country extracted
905 / 913 papers

Repository hosting platforms (from extracted links)

GitHub80 papers
OSF4 papers
Zenodo2 papers

Most frequently cited datasets

1.
ADNI
175 papers (19.2%)
2.
NACC
136 papers (14.9%)
3.
UK Biobank
92 papers (10.1%)
4.
MAPT
72 papers (7.9%)
5.
A4 Study
41 papers (4.5%)

Three Sub-Repositories

Sub-repo 01Active
Dataset Catalogue

31 AD datasets documented — the reference used for dataset mention scanning in Sub-repo 03.

github.com/KahinaBch/ad-dataset-catalogue
Sub-repo 02In progress
Atlases & Harmonisation

Neuroimaging atlases and harmonisation pipelines enabling multi-site pooling across diverse populations.

github.com/KahinaBch/ad-atlases-harmonisation
Sub-repo 03Active
Reproducibility Audit

913 papers screened across all three pillars. Complete 2025 pipeline run with results and figures.

github.com/KahinaBch/ad-reproducibility-audit

The Pipeline (Sub-repo 03)

Alzheimer's & Dementia · 913 papers · 2025 · Adapted from Boudreau et al. (MRM)

Reproducibility defined

Computational reproducibility: the ability of an independent researcher to re-run the analyses underlying a published paper and obtain the same results, requiring shared code, shared data, and documentation. We use the presence of open-science indicators in published papers (GitHub links, data availability statements, OSF/Zenodo deposits) as a proxy measure. Each pipeline step is labelled with the pillar it addresses.

1
PDF collection (manual)

Full-text PDFs of Alzheimer's & Dementia articles were manually downloaded for 2025. Automated bulk download is not possible due to copyright restrictions. 913 PDFs were collected and organised into month folders by acceptance date.

Manual download is required for copyright compliance .

2
PDF sorting + workbook

Each PDF is parsed to extract acceptance date; papers are sorted into month folders and compiled into an Excel workbook with one row per article. 2025: 913 rows.

3
Open-science keyword scan

Each PDF is scanned for platform names (github, osf, zenodo, dryad, figshare), sharing statements (code available, data available, openly available), and tool indicators (jupyter, notebook, open source). Repository links are extracted where present.

Hypothesis (Pillar 3): if sharing practices are improving, rates should increase over time. 2025: 88.7% keyword match, but only 9.4% contain an actual repository link.

4
Sex-specific keyword scan (NOVEL)

Full text is scanned for: sex-stratified, sex differences, gender-specific, sex-disaggregated, sex-based analysis, female-specific, APOE sex interaction, menopause, hormonal influence, stratified by sex. Papers classified as 'sex-aware main focus' (keyword in title) or 'sex-aware consideration' (keyword in body only).

Hypothesis (Pillar 2): the proportion of AD papers explicitly treating sex as a biological variable is low, in tension with the ~65% female disease burden and the NIH mandate.

4b
Dataset mention scan

PDF text is scanned for names from the AD Dataset Catalogue, identifying which datasets, and therefore which populations, are most cited in published AD research.

Hypothesis (Pillar 1): a small number of North American/European cohorts (ADNI, NACC, UK Biobank) will dominate dataset citations, reflecting the geographic concentration of AD research.

5
Manual curation

Human validation of every keyword match: is this a genuine sharing statement or a false positive? Does the linked repository actually contain the code/data described? Validates False Positive?, Shared code?, Shared data? columns.

Critical: automated detection cannot distinguish 'available upon request' (not open) from 'code at github.com/...' (genuinely open).

5b
Author metadata + gender inference

First/last author names are retrieved via DOI and gender is inferred from names using the gender-guesser Python package (heuristic, name-based). Enables analysis of gender representation in AD research leadership, a structural dimension of Pillar 3 (researcher diversity as part of the open-science infrastructure question).

6
Country extraction

First-author affiliation country is extracted from PDF text (pdfminer + pycountry). Maps the geographic origin of the research teams producing published AD science, a structural dimension of Pillar 3. 2025: 99.1% of papers successfully attributed.

7
Statistical analysis

Sharing rates, platform breakdown, sex-keyword prevalence, country distributions, and dataset citation frequencies are computed.

8
Publication-ready figures

All output figures generated (percentage/proportion based; one plot per file). Stored in plots/{year}/ and served directly from this repository.

Results: Three Pillars of Diversity

Figures served from ad-reproducibility-audit/plots/2025/.

I
Geographic & Ethnic Diversity

Who is studied?

The first dimension asks a deceptively simple question: which populations does published AD research actually examine? If the field reflected the global distribution of the dementia burden, dataset citations would show a broad spread across world regions. Instead, we find that a small number of well-funded North American and European cohorts dominate the citation record, while regions facing the fastest-growing burden remain marginal.
Dataset Citations: Which Populations Are Actually Studied?
Dataset Citations: Which Populations Are Actually Studied?

Finding: 482 of 913 papers (52.8%) cited at least one known dataset. The most frequently cited: ADNI (175 papers, 19.2%); NACC (136, 14.9%); UK Biobank (92, 10.1%). Bars are colour-coded by dataset geographic origin.

Why this matters: Dataset citations are a direct proxy for which populations are studied. A concentration in a handful of North American/European cohorts means that the findings published in the field's flagship journal overwhelmingly reflect a narrow slice of the world's at-risk population, limiting both scientific generalisability and equity in how results are applied globally.

II
Sex & Gender Diversity in Research

Does the literature treat sex as a biological variable?

Women comprise ~65% of people living with Alzheimer's disease, and sex shapes AD risk, hormonal biology, APOE4 interactions, tau propagation, and treatment response. The NIH has mandated 'sex as a biological variable' since 2016. Does the flagship AD journal show evidence of this shift, or does sex remain a covariate to adjust for rather than a research question in its own right?
Sex-Aware Level Distribution
Sex-Aware Level Distribution

Finding: Out of 913 papers: 37 (4.1%) classified as 'sex-aware main focus' (keyword in title); 196 (21.5%) as 'sex-aware consideration' (keyword in body only); the remainder had no sex-specific keywords detected.

Why this matters: Only 4.1% of papers make sex a primary research focus, despite women accounting for two-thirds of the disease burden. This quantifies, for the first time in a systematic and reproducible way, the gap between the biological importance of sex in AD and its treatment in the published literature.

III
Data Infrastructure, Reproducibility & Researcher Diversity

Is the infrastructure open, and the research team diverse?

The third dimension is the broadest. It asks whether the scientific infrastructure is open enough for findings to be verified, built upon, and adapted to new populations, and whether the research teams producing those findings reflect the communities most affected. We measure two things: (1) the actual state of code and data sharing in the flagship AD journal; (2) the geographic origin and gender composition of authorship as structural indicators of who is shaping the research agenda.
88.7%
Keyword match
810 / 913 papers
open-science terms found
9.4%
Actual repo link
86 / 913 papers
genuine open code/data
3.0%
Data sharing
27 / 913 papers
data openly deposited
80
GitHub
links extracted
dominant platform
4
OSF
links extracted
2
Zenodo
links extracted

Key finding: The gap between 88.7% keyword match and 9.4% genuine repository links is the core result of Pillar III. It reveals that the majority of open-science language in the AD literature is not backed by accessible repositories, distinguishing between the rhetoric of open science and its practice.

Where Does Published AD Research Come From?
Where Does Published AD Research Come From?

Finding: 905 of 913 papers (99.1%) were successfully attributed to a first-author country. The distribution reveals strong concentration in North America and Europe, with minimal representation from Latin America, Africa, and South/Southeast Asia, the regions facing the fastest-growing dementia burden.

Why this matters: The geographic origin of research teams shapes which questions are asked, which populations are recruited, and what counts as a priority. Researchers embedded in affected regions bring community trust and context-specific expertise that external teams cannot replicate. This figure maps the current baseline of geographic equity in AD research leadership.

First-Author Gender Distribution
First-Author Gender Distribution

Finding: Distribution of inferred first-author gender across 913 papers (2025), derived from name-based inference. Reflects who is entering and publishing in the AD research pipeline.

Why this matters: Women researchers are more likely to include sex-stratified analyses and to prioritise diversity-focused questions. First-author gender tracks whether the research pipeline is broadening, and whether gender diversity in the workforce translates into methodological diversity in the literature.

Last-Author (Senior) Gender Distribution
Last-Author (Senior) Gender Distribution

Finding: Distribution of inferred last-author gender, reflecting research leadership (principal investigator positions). Comparing first- vs. last-author distributions reveals whether gender imbalances are concentrated at the senior level.

Why this matters: Senior researchers set agendas, secure funding, and decide what populations to study. Gender diversity at this level is a structural predictor of whether sex-disaggregated and diversity-oriented research will be systematically prioritised, the leadership complement to the biological gap quantified in Pillar II.

DISCLAIMER: Scope and limitations

This analysis is intentionally narrow but reproducible, transparent, and extendable: the pipeline can be applied to any journal, any year, and any keyword set.

Single journal: Results describe Alzheimer's & Dementia only and cannot be generalised to the broader AD literature, other dementia journals, or preprints.
Keyword sensitivity: Papers sharing code without expected terminology will be missed (false negatives). Papers mentioning sharing without doing it will be flagged (false positives), addressed by manual curation.
Sex keywords are proxies: Detecting 'sex differences' flags intent, not quality. A paper may mention sex as a demographic variable without stratifying results.
PDF access: PDFs must be downloaded manually due to copyright. This limits automation for researchers without institutional access.
Country attribution: Country is assigned to the first author's affiliation. A US-based researcher studying an African cohort is attributed to the USA, not to the population studied.
Gender inference: First/last author gender is inferred from names, an imperfect proxy that treats gender as binary and may fail for gender-neutral or culturally unfamiliar names.
Ethnic diversity within countries is invisible: The pipeline measures geographic diversity at the country level. Studies that investigate ethnic or racial diversity within a single country, for example comparing African American and White American participants in a US cohort, are not captured. Intra-country ethnic diversity analyses are an important and currently unmeasured dimension that future iterations of this audit should address.
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A living investigation

Version 1.0 · 2025 · Open to contribution

This is a first investigation, designed to be deepened, extended, and continued over time, tracking how open-science practices and researcher diversity in AD research evolve year by year. It is also meant to be participative. If something seems incorrect, could be improved, or if you have data, datasets, or perspectives to contribute, your input is welcome.

Future directions include extending the audit to other years and journals, adding intra-country ethnic diversity detection, incorporating citation network analysis, and expanding the dataset catalogue with community contributions.

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