Evidence map›Paper›PMID 42484854›Full record

ReviewDie Ophthalmologie2026

[What do patients want in clinical trials? : Perspectives from ophthalmology and patient advocacy groups].

Sandra Jansen, Sandra Schippenbeil, Cornel Hirth, Franz Badura, Martin Rügert, Kerstin Stettner, Hans-Werner Merkelbach, Marion Steinbach, Dario Madani, Daniela Brohlburg and 2 more

Abstract readEnglish AbstractReview
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In one paragraph

Review in Die Ophthalmologie, 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

12 authors.

Sandra JansenPro Retina Deutschland e. V., Bonn, Deutschland.
Sandra SchippenbeilDeutscher Blinden- und Sehbehindertenverband (DBSV), Berlin, Deutschland.
Cornel HirthBundesverband Glaukom-Selbsthilfe e. V. (BVGS), Dortmund, Deutschland.
Franz BaduraRetina International, Dublin, Irland.
Martin RügertDeutsche Uveitis Arbeitsgemeinschaft (DUAG) e. V., Krautheim, Deutschland.
Kerstin StettnerDeutsche Uveitis Arbeitsgemeinschaft (DUAG) e. V., Krautheim, Deutschland.
Hans-Werner MerkelbachAchromatopsie-Selbsthilfe e. V., Düsseldorf, Deutschland.
Marion SteinbachPro Retina Deutschland e. V., Bonn, Deutschland.
Dario MadaniPro Retina Deutschland e. V., Bonn, Deutschland.
Daniela BrohlburgRetina plus e. V., Bonn, Deutschland.
Markus GeorgRetina plus e. V., Bonn, Deutschland.
Katrin LorenzAugenklinik und Poliklinik, Universitätsmedizin Mainz, Johannes Gutenberg-Universität Mainz, Langenbeckstr. 1, 55131, Mainz, Deutschland. katrin.lorenz@unimedizin-mainz.de.ORCID http://orcid.org/0000-0002-1755-7396

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundParticipation in clinical trials often involves uncertainty despite high patient interest.

objectiveTo summarize patient perspectives and derive recommendations for patient-centered clinical trial design in ophthalmology. MATERIAL AND

methodsStructured review integrating the literature and experiences from patient organizations and clinical trial centers.

resultsUnderstandable clarification, realistic communication of expectancy, accessible information and study centers, continuity of care and contact persons, transparent cost regulation and reduction of logistical burdens are crucial for participation and retention in studies. Patient self-help organizations and ophthalmologists play a key role in information dissemination. After trial completion, participants expect feedback on group allocation, study results and further treatment options.

conclusionEarly patient involvement and patient-oriented study design improve feasibility, recruitment, retention and ethical quality of clinical research. A timely incorporation of self-help, comprehensible communication and practical study trajectories are decisive.

Indexed as

Clinical Trials as TopicOphthalmologyPatient AdvocacyPatient ParticipationCommunicationHumansPatient-Centered CarePatient SelectionClinical researchInformed decision makingPatient-centered carePatient participationRecruitment

Identifiers

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.