Evidence map›Paper›PMID 40960229›Full record

ReviewTranslational vision science & technology2025

Stargardt's Connected Research Network Inaugural Meeting: Landscape Review and Horizon Scanning of Stargardt Disease.

Alexis Ceecee Britten-Jones, Saoud Al-Khuzaei, Matteo Rizzi, Michael D Crossland, Malgorzata B Rozanowska, Bernardo S Mendes, Thales A C de Guimaraes, Malena Daich Varela, Dayyanah Sumodhee, William A Woof and 13 more

Abstract readReview
PubMed Full text at PMC Publisher
In one paragraph

Review in Translational vision science & technology, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing 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

2 citing papers in PubMed.

  1. Article
  2. Review
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

23 authors.

Alexis Ceecee Britten-JonesDepartment of Optometry and Vision Sciences, Faculty of Medicine, Dentistry and Health Sciences, University of Melbourne, Parkville, Australia.
Saoud Al-KhuzaeiOxford Eye Hospital, John Radcliffe Hospital, Oxford, UK.
Matteo RizziUniversity College London Institute of Ophthalmology, London, UK.
Michael D CrosslandUniversity College London Institute of Ophthalmology, London, UK.
Malgorzata B RozanowskaSchool of Optometry and Vision Sciences, Cardiff University, Cardiff, Wales.
Bernardo S MendesUniversity College London Institute of Ophthalmology, London, UK.
Thales A C de GuimaraesUniversity College London Institute of Ophthalmology, London, UK.
Malena Daich VarelaUniversity College London Institute of Ophthalmology, London, UK.
Dayyanah SumodheeUniversity College London Institute of Ophthalmology, London, UK.
William A WoofUniversity College London Institute of Ophthalmology, London, UK.
Seemi KhanAlkeus Pharmaceuticals, Inc., Davis Square, MA, USA.
Aniz GirachSpliceBio, Barcelona Science Park, Barcelona, Spain.
Susan M DownesOxford Eye Hospital, John Radcliffe Hospital, Oxford, UK.
Michael E CheethamUniversity College London Institute of Ophthalmology, London, UK.
Davide PiccoloUniversity College London Institute of Ophthalmology, London, UK.
Lauren N AytonDepartment of Optometry and Vision Sciences, Faculty of Medicine, Dentistry and Health Sciences, University of Melbourne, Parkville, Australia.
Marina Leite BrandãoStargardt's Connected, Waltham Cross, UK.
Hendrick P N SchollBelite Bio Inc, San Diego, CA, USA.
Andi SkiltonStargardt's Connected, Waltham Cross, UK.
Bhavna TailorStargardt's Connected, Waltham Cross, UK.
Michel MichaelidesUniversity College London Institute of Ophthalmology, London, UK.
Nikolas PontikosUniversity College London Institute of Ophthalmology, London, UK.
Stargardt's Connected

Funding

Wellcome Trust
6 · The paper itself

Abstract

Purpose: The purpose of this study was to update the recent progress in the diagnosis, management, and treatments for Stargardt disease. Methods: On November 22, 2024, Stargardt's Connected held its inaugural meeting of their Research Network, attended by clinicians, researchers, industry partners, and patient representatives. This meeting aimed to provide an update on Stargardt disease management and research and develop a call to action for the wider community. The format was rapid-fire presentations followed by a roundtable discussion. This review presents the meeting proceeding, along with a summary of best up-to-date evidence and key calls to action. Results: Topics included: (1) advances in the understanding of Stargardt disease: natural history, genetic basis, animal models, and emerging therapies; (2) supporting individuals with Stargardt disease: disease impact, technological advancements, and lifestyle modifications; and (3) advancing research through stakeholder engagement, research registries, and patient input. The network acknowledges the importance of collaboration among patients, clinicians, researchers, and industry to address critical gaps in the diagnosis, management, and treatment of Stargardt disease. Patient engagement was emphasized as being crucial for driving progress in the field. Conclusions: Recent years have seen significant progress in understanding and managing Stargardt disease. Key calls to action included the areas of improving genetic testing and counseling, advancing research registries, supporting research and clinical trials, growing multidisciplinary care, addressing lifestyle and dietary modifications, and enhancing technological support. Translational Relevance: This Stargardt's Connected Research Network initiative outlines a multistakeholder engagement model to discuss ongoing research and emerging treatments for Stargardt disease, a condition with promising therapeutic developments.

Indexed as

Macular DegenerationStargardt DiseaseAnimalsHumans

Identifiers

PMID40960229
PMCPMC12449819

What OpenQuestion holds

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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.