Evidence map›Paper›PMID 42623115›Full record

ArticleFEBS open bio2026

From patient advocacy to patient-driven research: Building active partnerships beginning at the bench to reach the bedside.

Jenica H Kakadia, Rachel Heilmann, Maximiliano Barrientos, Laura MacNeill, Ingrid Vallee, Sarah K Schultz, Patrick O'Donoghue, Angelica A Moresco, Victoria M Siu, Ilka U Heinemann

Abstract read
In one paragraph

Article in FEBS open bio, 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

10 authors.

Jenica H KakadiaDepartment of Biochemistry, The University of Western Ontario, London, Canada.
Rachel HeilmannThe Rory Belle Foundation, Denver, CO, USA.ORCID https://orcid.org/0009-0002-7726-4795
Maximiliano BarrientosCharcot-Marie-Tooth Research Foundation, Atlanta, GA, USA.
Laura MacNeillCharcot-Marie-Tooth Research Foundation, Atlanta, GA, USA.
Ingrid ValleeThe Rory Belle Foundation, Denver, CO, USA.ORCID https://orcid.org/0000-0002-3406-338X
Sarah K SchultzDepartment of Biochemistry, The University of Western Ontario, London, Canada.
Patrick O'DonoghueDepartment of Biochemistry, The University of Western Ontario, London, Canada.ORCID https://orcid.org/0000-0002-9500-8640
Angelica A MorescoChildren's Health Research Institute, London, Canada.ORCID https://orcid.org/0000-0002-8827-6196
Victoria M SiuDepartment of Biochemistry, The University of Western Ontario, London, Canada.
Ilka U HeinemannDepartment of Biochemistry, The University of Western Ontario, London, Canada.ORCID https://orcid.org/0000-0003-1721-1667

Funding

Huntington Society of Canada Endowed Research ChairInstitute of Genetics 165985Institute of Genetics 185961Rare Disease Models and Mechanism GrantThe Rory Belle Foundation
6 · The paper itself

Abstract

Patient advocates offer lived experience that can shape research priorities, methods, and outcomes. Patient engagement contributes valuable resources to research, including meaningful additions to research design, definition of research priorities, and dissemination of outcomes. It is therefore critical that patients and patient advocates be part of the biomedical research process; which can be achieved by changing the perspective of patients as the recipients of research outcomes, to being partners in the process. Patient, clinician, and researcher interactions are particularly important in rare disease research, where little funding is allocated to each disease, making the definition of research priorities even more important. Here, we outline how patients can contribute to biomedical research and provide a step-by-step guide for patient engagement at scientific conferences.

Indexed as

patient advocacy groupspatient‐driven researchpatient panels at scientific conferences

Identifiers

PMID42623115
PMCPMC13492564

What Socratic holds

Textmetadata
LicenceCC BY
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 Socratic graph.