Evidence map›Paper›PMID 41027690›Full record

ArticleBMJ open2025

Australian research priorities for inherited retinal diseases: a James Lind Alliance priority setting partnership.

Eden G Robertson, Kate Hetherington, Meredith Prain, Alan Ma, Lauren N Ayton, Robyn V Jamieson, Emily Shepard, Leighton Boyd, Julia Hall, Rosemary Boyd and 7 more

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in BMJ open, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing 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

1 citing paper in PubMed.

  1. Article
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

17 authors.

Eden G RobertsonSchool of Clinical Medicine, UNSW Medicine and Health, University of New South Wales, Sydney, New South Wales, Australia eden.robertson@unsw.edu.au.ORCID http://orcid.org/0000-0001-9395-7896
Kate HetheringtonSchool of Clinical Medicine, UNSW Medicine and Health, University of New South Wales, Sydney, New South Wales, Australia.
Meredith PrainAble Australia Services, Melbourne, Victoria, Australia.
Alan MaEye Genetics Research Unit, Children's Medical Research Institute, The University of Sydney, Sydney, New South Wales, Australia.
Lauren N AytonDepartments of Optometry and Vision Sciences, and Surgery (Ophthalmology), The University of Melbourne, Parkville Campus, Melbourne, Victoria, Australia.
Robyn V JamiesonSpecialty of Genomic Medicine, Faculty of Medicine and Health, The University of Sydney, Sydney, New South Wales, Australia.
Emily ShepardDepartments of Optometry and Vision Sciences, and Surgery (Ophthalmology), The University of Melbourne, Parkville Campus, Melbourne, Victoria, Australia.
Leighton BoydRetina Australia, Melbourne, Victoria, Australia.
Julia HallRetina Australia, Melbourne, Victoria, Australia.
Rosemary BoydRetina Australia, Melbourne, Victoria, Australia.
Sally KarandrewsBlind Citizens Australia, Sydney, New South Wales, Australia.
Hollie FellerUsherKids Australia, Melbourne, Victoria, Australia.
Matthew P SimunovicThe Sydney Children's Hospitals Network, Westmead, New South Wales, Australia.ORCID http://orcid.org/0000-0003-0596-1356
John R GriggThe Sydney Children's Hospitals Network, Westmead, New South Wales, Australia.
Kanae YamamotoN/A, N/A, N/A, Australia.
Claire E WakefieldSchool of Clinical Medicine, UNSW Medicine and Health, University of New South Wales, Sydney, New South Wales, Australia.
Anai Gonzalez-CorderoStem Cell Medicine Group, Children's Medical Research Institute, Westmead, New South Wales, Australia.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

objectivesInherited retinal diseases (IRDs) are a broad range of diseases associated with abnormalities/degeneration of retinal cells. We aimed to identify the top 10 Australian research priorities for IRDs to ultimately facilitate more meaningful and potentially cost-effective research.

designWe conducted a James Lind Alliance priority setting partnership that involved two Australian-wide surveys and online workshops.

settingAustralia-wide.

participantsIndividuals aged 16 years or older were eligible to participate if they had an IRD, were caregivers of an individual with an IRD or were health professionals providing care to this community. OUTCOME MEASURE: In Survey 1, we gathered participants' unanswered questions about IRDs. We grouped these into summary questions and undertook a literature review to verify if they were truly unanswered (ie, evidence uncertainties). In Survey 2, participants voted for the uncertainties that they considered a priority. Top-ranked uncertainties progressed for discussion and final prioritisation in two workshops.

resultsIn Survey 1, we collected 223 questions from 69 participants. We grouped these into 42 summary questions and confirmed 41 as evidence uncertainties. In Survey 2, 151 participants voted, with the 16 uncertainties progressing to final prioritisation. The top 10 priorities, set by the 24 workshop participants, represented (1) treatment/cure; (2) symptoms and disease progression; (3) psychosocial well-being and (4) health service delivery. The #1 priority was for treatment to prevent, slow down or stop vision loss, followed by the #2 priority to address the psychological impact of having an IRD.

conclusionThe top 10 research priorities highlight the need for IRD research that takes a whole-person, systems approach. Collaborations to progress priorities will accelerate the translation of research into real-world benefits.

Indexed as

Biomedical ResearchHealth PrioritiesResearchRetinal DiseasesAdolescentAdultAustraliaFemaleHumansMaleMiddle AgedSurveys and QuestionnairesYoung AdultCommunity-Based Participatory ResearchCommunity ParticipationOPHTHALMOLOGYPerson-Centered CareRare DiseasesResearch Design

Identifiers

PMID41027690
PMCPMC12519664

What OpenQuestion 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 OpenQuestion graph.