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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
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  Data: Recommendations for the diagnosis and management of cln3 disease (batten disease) using the Delphi consensus methodology.
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  Data: <searchLink fieldCode="AU" term="%22Mink+JW%22">Mink JW</searchLink>; Pittsford, NY, USA. jwmink58@gmail.com.<br /><searchLink fieldCode="AU" term="%22Adams+HR%22">Adams HR</searchLink>; University of Rochester Medical Center, Rochester, NY, USA.<br /><searchLink fieldCode="AU" term="%22Ahrens-Nicklas+R%22">Ahrens-Nicklas R</searchLink>; The Children's Hospital of Philadelphia, University of Pennsylvania, Philadelphia, PA, USA.<br /><searchLink fieldCode="AU" term="%22Andersen+BN%22">Andersen BN</searchLink>; Centre for Rare Diseases, Aarhus University Hospital, Aarhus, Denmark.<br /><searchLink fieldCode="AU" term="%22Augustine+E%22">Augustine E</searchLink>; Kennedy Krieger Institute, Baltimore, MD, USA.<br /><searchLink fieldCode="AU" term="%22Boustany+RM%22">Boustany RM</searchLink>; American University of Beirut, Beirut, Lebanon.<br /><searchLink fieldCode="AU" term="%22Cooper+JD%22">Cooper JD</searchLink>; Washington University in St Louis, School of Medicine, St. Louis, MO, USA.<br /><searchLink fieldCode="AU" term="%22Levin+A%22">Levin A</searchLink>; University of Rochester Medical Center, Rochester, NY, USA.; Flaum Eye Institute, University of Rochester, Rochester, NY, USA.<br /><searchLink fieldCode="AU" term="%22Gissen+P%22">Gissen P</searchLink>; UCL Great Ormond Street Institute of Child Health, University College London, London, UK.; NIHR Great Ormond Street Hospital Biomedical Research Centre, London, UK.<br /><searchLink fieldCode="AU" term="%22Laine+M%22">Laine M</searchLink>; Helsinki University Hospital, Helsinki, Finland.<br /><searchLink fieldCode="AU" term="%22Mason+HL%22">Mason HL</searchLink>; Coufetery Comms, Medical Writing Services, Paris,, France.<br /><searchLink fieldCode="AU" term="%22Mole+SE%22">Mole SE</searchLink>; UCL Great Ormond Street Institute of Child Health, University College London, London, UK.<br /><searchLink fieldCode="AU" term="%22Nickel+M%22">Nickel M</searchLink>; Children's Hospital, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.<br /><searchLink fieldCode="AU" term="%22Ostergaard+JR%22">Ostergaard JR</searchLink>; Centre for Rare Diseases, Aarhus University Hospital, Aarhus, Denmark.<br /><searchLink fieldCode="AU" term="%22Sikorra+L%22">Sikorra L</searchLink>; Los Robles Hospital and Medical Center, Thousand Oaks, CA, USA.<br /><searchLink fieldCode="AU" term="%22Treat+L%22">Treat L</searchLink>; Children's Hospital Colorado, University of Colorado School of Medicine, Aurora, CO, USA.<br /><searchLink fieldCode="AU" term="%22Whiteman+IT%22">Whiteman IT</searchLink>; BDSRA Australia, Killarney Vale, NSW, Australia.; BDSRA Foundation, Columbus, OH, USA.; Beyond Batten Disease Foundation, Austin, TX, USA.<br /><searchLink fieldCode="AU" term="%22Williams+R%22">Williams R</searchLink>; NIHR Great Ormond Street Hospital Biomedical Research Centre, London, UK.<br /><searchLink fieldCode="AU" term="%22Schulz+A%22">Schulz A</searchLink>; Children's Hospital, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.; German Center for Child and Adolescent Health (DZKJ), Hamburg, Germany.
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  Data: <searchLink fieldCode="JN" term="%22101266602%22">Orphanet journal of rare diseases</searchLink> [Orphanet J Rare Dis] 2026 Mar 10; Vol. 21 (1). <i>Date of Electronic Publication: </i>2026 Mar 10.
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  Data: <i>Publisher: </i><searchLink fieldCode="PB" term="%22BioMed+Central%22">BioMed Central </searchLink><i>Country of Publication: </i>England <i>NLM ID: </i>101266602 <i>Publication Model: </i>Electronic <i>Cited Medium: </i>Internet <i>ISSN: </i>1750-1172 (Electronic) <i>Linking ISSN: </i><searchLink fieldCode="IS" term="%2217501172%22">17501172 </searchLink><i>NLM ISO Abbreviation: </i>Orphanet J Rare Dis <i>Subsets: </i>MEDLINE
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