Initiation of a global consortium to study the progression of age-related macular degeneration: RIMR AMD consortium report # 1.

Journal: Graefe's archive for clinical and experimental ophthalmology = Albrecht von Graefes Archiv fur klinische und experimentelle Ophthalmologie
Published Date: Dec 29, 2025

Abstract

PURPOSE: To describe the design and organizational structure of a global collaborative consortium aimed at aggregating longitudinal multimodal imaging data to better understand the progression of age-related macular degeneration (AMD) and facilitate therapeutic development. METHODS: The Ryan Initiative for Macular Research (RIMR) AMD Consortium was established as a nonprofit organization, bringing together academic institutions, biopharmaceutical companies, and imaging technology providers. The consortium collects, de-identifies, and harmonizes longitudinal optical coherence tomography (OCT) data, as well as associated clinical metadata, from multiple international clinical centers using a cloud-based infrastructure. Imaging data is converted and stored in DICOM format, and associated clinical data is mapped to the OMOP Common Data Model. All analyses are conducted within a secure cloud environment, supporting both built-in and member-contributed artificial intelligence (AI) tools. RESULTS: As of the time of reporting, the Consortium has ingested over 100,000 OCT volumes from more than 5,000 subjects across 7 global cohorts spanning 4 continents and 3 major OCT platforms. Based on information provided by the data providers, the dataset encompasses a wide range of AMD stages, from normal aging to late-stage neovascular or atrophic AMD, with longitudinal follow-up extending beyond 15 years for some subjects. A data harmonization pipeline has been established to convert all ingested OCT data to the DICOM standard and is thus ready for automated analysis to gain disease-related insights. CONCLUSIONS: The RIMR AMD Consortium represents a novel model for global collaboration in AMD research, enabling the pooling and analysis of heterogeneous imaging data while addressing privacy, regulatory, and interoperability challenges. This framework may serve as a model for similar initiatives in other ocular diseases.

Authors

  • SriniVas R Sadda
    Doheny Image Analysis Laboratory, Doheny Eye Institute, Los Angeles, CA, USA.
  • Charles C Wykoff
    Retina Consultants of Texas, Retina Consultants of America, Houston, TX, USA.
  • Itay Chowers
    Hadassah Medical Center, Faculty of Medicine, the Hebrew University of Jerusalem, Jerusalem, Israel.
  • Jean-François Korobelnik
    Bordeaux Population Health Research Center, Inserm, Université de Bordeaux, Bordeaux, France; Department of Ophthalmology, Bordeaux University Hospital, Bordeaux, France.
  • Raja Narayana
    Anant Bajaj Retina Institute, L.V. Prasad Eye Institute, Hyderabad, India.
  • Rajeev R Pappuru
    Anant Bajaj Retina Institute, L.V. Prasad Eye Institute, Hyderabad, India.
  • Frank G Holz
    Department of Ophthalmology, University of Bonn, Bonn, Germany.
  • Robyn Guymer
    Centre for Eye Research Australia, Royal Victorian Eye and Ear Hospital, University of Melbourne, Melbourne, Victoria, Australia.
  • Chui Ming Gemmy Cheung
    Singapore National Eye Center, Singapore, Singapore.
  • David S Boyer
    Retina-Vitreous Associates Medical Group, Beverly Hills, CA, USA.
  • Michael Ip
    RIMR AMD Consortium, Pasadena, CA, USA.
  • Heiko G Niessen
    Boehringer Ingelheim Pharma GmbH & Co. KG, Biberach, Germany.
  • Nancy Holenkamp
    Roche Pharmaceuticals, Basel, Switzerland.
  • Mary Durbin
    Heru, Inc., Miami, Florida.
  • Stephanie Magazzeni
    Carl Zeiss Meditec AG, Munich, Germany.
  • Anne-Marie Cairns
    , Optos plc, Dunfermline, Scotland, UK.
  • Carlos Ciller
    Research, RetinAI Medical AG, Bern, Switzerland.
  • Natasa Jovic
    Ikerian AG, Bern, Switzerland and RetinAI U.S. Inc., Boston, MA, USA.
  • Joseph Blair
    Ikerian AG, Bern, Switzerland and RetinAI U.S. Inc., Boston, MA, USA.
  • Sandro De Zanet
    RetinAI Medical AG, Bern, Switzerland.
  • Aaron Y Lee
    Department of Ophthalmology, University of Washington, Seattle, Washington.

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