Recommendations for the diagnosis and management of cln3 disease (batten disease) using the Delphi consensus methodology.

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Title: Recommendations for the diagnosis and management of cln3 disease (batten disease) using the Delphi consensus methodology.
Authors: Mink JW; Pittsford, NY, USA. jwmink58@gmail.com., Adams HR; University of Rochester Medical Center, Rochester, NY, USA., Ahrens-Nicklas R; The Children's Hospital of Philadelphia, University of Pennsylvania, Philadelphia, PA, USA., Andersen BN; Centre for Rare Diseases, Aarhus University Hospital, Aarhus, Denmark., Augustine E; Kennedy Krieger Institute, Baltimore, MD, USA., Boustany RM; American University of Beirut, Beirut, Lebanon., Cooper JD; Washington University in St Louis, School of Medicine, St. Louis, MO, USA., Levin A; University of Rochester Medical Center, Rochester, NY, USA.; Flaum Eye Institute, University of Rochester, Rochester, NY, USA., Gissen P; UCL Great Ormond Street Institute of Child Health, University College London, London, UK.; NIHR Great Ormond Street Hospital Biomedical Research Centre, London, UK., Laine M; Helsinki University Hospital, Helsinki, Finland., Mason HL; Coufetery Comms, Medical Writing Services, Paris,, France., Mole SE; UCL Great Ormond Street Institute of Child Health, University College London, London, UK., Nickel M; Children's Hospital, University Medical Center Hamburg-Eppendorf, Hamburg, Germany., Ostergaard JR; Centre for Rare Diseases, Aarhus University Hospital, Aarhus, Denmark., Sikorra L; Los Robles Hospital and Medical Center, Thousand Oaks, CA, USA., Treat L; Children's Hospital Colorado, University of Colorado School of Medicine, Aurora, CO, USA., Whiteman IT; BDSRA Australia, Killarney Vale, NSW, Australia.; BDSRA Foundation, Columbus, OH, USA.; Beyond Batten Disease Foundation, Austin, TX, USA., Williams R; NIHR Great Ormond Street Hospital Biomedical Research Centre, London, UK., Schulz A; Children's Hospital, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.; German Center for Child and Adolescent Health (DZKJ), Hamburg, Germany.
Source: Orphanet journal of rare diseases [Orphanet J Rare Dis] 2026 Mar 10; Vol. 21 (1). Date of Electronic Publication: 2026 Mar 10.
Publication Type: Journal Article; Systematic Review
Journal Info: Publisher: BioMed Central Country of Publication: England NLM ID: 101266602 Publication Model: Electronic Cited Medium: Internet ISSN: 1750-1172 (Electronic) Linking ISSN: 17501172 NLM ISO Abbreviation: Orphanet J Rare Dis Subsets: MEDLINE
Database: MEDLINE Ultimate
Description
ISSN:1750-1172
DOI:10.1186/s13023-026-04298-2