Developing prognostic models that predict onset and progression rates in genetic neurodegenerative diseases: perspectives of healthcare professionals in genetic counselling.

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Title: Developing prognostic models that predict onset and progression rates in genetic neurodegenerative diseases: perspectives of healthcare professionals in genetic counselling.
Authors: Rensink MJ; Department of Public Health - Ethics, Philosophy and History of Medicine Group, Erasmus Medical Centre, Dr. Molewaterplein 40, Rotterdam, 3015 GD, The Netherlands. m.rensink@erasmusmc.nl., Bolt LLE; Department of Public Health - Ethics, Philosophy and History of Medicine Group, Erasmus Medical Centre, Dr. Molewaterplein 40, Rotterdam, 3015 GD, The Netherlands., Tibben A; Department of Clinical Genetics, Leiden University Medical Centre, Leiden, The Netherlands., Oosterloo M; Department of Neurology, Maastricht University Medical Centre+, Maastricht, The Netherlands.; Institute for Mental Health and Neuroscience, Maastricht University, Maastricht, The Netherlands., Warrenburg BPCV; Department of Neurology, Donders Institute for Brain, Cognition and Behavior, Donders Center for Medical Neuroscience, Radboud University Medical Center, Nijmegen, The Netherlands., Schermer MHN; Erasmus School of Health Policy and Management, Erasmus University, Rotterdam, The Netherlands.
Source: Orphanet journal of rare diseases [Orphanet J Rare Dis] 2026 May 13; Vol. 21 (1). Date of Electronic Publication: 2026 May 13.
Publication Type: Journal Article
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
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  Data: <searchLink fieldCode="AU" term="%22Rensink+MJ%22">Rensink MJ</searchLink>; Department of Public Health - Ethics, Philosophy and History of Medicine Group, Erasmus Medical Centre, Dr. Molewaterplein 40, Rotterdam, 3015 GD, The Netherlands. m.rensink@erasmusmc.nl.<br /><searchLink fieldCode="AU" term="%22Bolt+LLE%22">Bolt LLE</searchLink>; Department of Public Health - Ethics, Philosophy and History of Medicine Group, Erasmus Medical Centre, Dr. Molewaterplein 40, Rotterdam, 3015 GD, The Netherlands.<br /><searchLink fieldCode="AU" term="%22Tibben+A%22">Tibben A</searchLink>; Department of Clinical Genetics, Leiden University Medical Centre, Leiden, The Netherlands.<br /><searchLink fieldCode="AU" term="%22Oosterloo+M%22">Oosterloo M</searchLink>; Department of Neurology, Maastricht University Medical Centre+, Maastricht, The Netherlands.; Institute for Mental Health and Neuroscience, Maastricht University, Maastricht, The Netherlands.<br /><searchLink fieldCode="AU" term="%22Warrenburg+BPCV%22">Warrenburg BPCV</searchLink>; Department of Neurology, Donders Institute for Brain, Cognition and Behavior, Donders Center for Medical Neuroscience, Radboud University Medical Center, Nijmegen, The Netherlands.<br /><searchLink fieldCode="AU" term="%22Schermer+MHN%22">Schermer MHN</searchLink>; Erasmus School of Health Policy and Management, Erasmus University, Rotterdam, The Netherlands.
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  Data: <searchLink fieldCode="JN" term="%22101266602%22">Orphanet journal of rare diseases</searchLink> [Orphanet J Rare Dis] 2026 May 13; Vol. 21 (1). <i>Date of Electronic Publication: </i>2026 May 13.
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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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        Value: 10.1186/s13023-026-04396-1
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