Evidence demands action: An invitation to share the burden of proof

Danielle M Andrade^{1

2

3

4}, Anne T Berg⁵, Arunan Selvarajah^{1

4}, Andrea Sabo⁶, Carolina Gorodetsky⁷, Paula Marques^{1

3}, Ilakkiah Chandran^{1

4}, Miles Thompson¹, Quratulain Zulfiqar Ali^{1

4}, Mary Pat McAndrews⁸, Maria Carmela Tartaglia², Victor S T Lira^{1

3}, Linda Huh⁹, Mary Connolly⁹, Arezoo Rezazadeh¹⁰, Farah Qaiser¹, Tadeu A Fantaneanu¹⁰, Monica Duong¹, Karen Barboza¹, Lysa Boissé Lomax¹¹, Luciana Inuzuka Nakaharada¹², Jack Arbinuch¹³, Mariana Espindola¹², Eliana Garzon¹², Gianluca Sorrento¹⁴, Mary Anne Meskis¹⁵, Nicole Villas¹⁵, Veronica Hood¹⁵, Marta Gonzalez¹⁶, Elena Cardenal-Muñoz¹⁶, Jose Angel Aibar¹⁶, Lauraine McKenna¹⁶, Christine Linehan¹⁷, Ryan Yuen¹⁸, Babak Taati⁶, Alfonso Fasano¹⁴, Orrin Devinsky¹⁹, Kette Valente²⁰

Affiliations

¹ Adult Genetic Epilepsy (AGE) Program, University of Toronto, Toronto, Ontario, Canada.
² Division of Neurology, Temerty Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada.
³ Comprehensive Epilepsy Program, Krembil Research Institute, Toronto Western Hospital, Institute of Medical Sciences, University of Toronto, Toronto, Ontario, Canada.
⁴ Institute of Medical Sciences, University of Toronto, Toronto, Ontario, Canada.
⁵ Ann & Robert H. Lurie Children's Hospital of Chicago, Departments of Pediatrics and Neurological Surgery, Northwestern Feinberg School of Medicine, Chicago, Illinois, USA.
⁶ Kite Research Institute, University of Toronto, Toronto, Ontario, Canada.
⁷ Division of Neurology, The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada.
⁸ Department of Neuropsychology and Division of Brain, Imaging & Behaviour, Krembil Neurosciences Institute, University of Toronto, University Health Network, Toronto, Ontario, Canada.
⁹ Division of Neurology, Department of Pediatrics, BC Children's Hospital, University of British Columbia, Vancouver, British Columbia, Canada.
¹⁰ Division of Neurology, The Ottawa Hospital, University of Ottawa, Ottawa, Ontario, Canada.
¹¹ Division of Neurology, Kingston General Hospital, University of Kingston, Kingston, Ontario, Canada.
¹² São Paulo Integrated Neurology Institute, São Paulo, Brazil.
¹³ David and Judi Proctor Department of Mathematics, The University of Oklahoma, Norman, Oklahoma, USA.
¹⁴ Edmond J. Safra Program in Parkinson's Disease and Morton and Gloria Shulman Movement Disorders Centre, Toronto Western Hospital, UHN, Toronto, Ontario, Canada.
¹⁵ Dravet Syndrome Foundation, Cherry Hill, New Jersey, USA.
¹⁶ Dravet Syndrome Foundation, Madrid, Spain.
¹⁷ School of Psychology, University College Dublin, Dublin, Ireland.
¹⁸ Genetics & Genome Biology, The Hospital for Sick Children, Department of Molecular Genetics, University of Toronto, Toronto, Ontario, Canada.
¹⁹ Division of Neurology, New York University Langone Epilepsy Center, New York, New York, USA.
²⁰ Pediatric Neurology, Hospital das Clínicas, Faculty of Medicine of the University of São Paulo (HCFMUSP), São Paulo, Brazil.

PMID: 40762984
PMCID: PMC12605728
DOI: 10.1111/epi.18583

Evidence demands action: An invitation to share the burden of proof

Danielle M Andrade et al. Epilepsia. 2025 Oct.

. 2025 Oct;66(10):3681-3687.

doi: 10.1111/epi.18583. Epub 2025 Aug 5.

Authors

Affiliations

¹ Adult Genetic Epilepsy (AGE) Program, University of Toronto, Toronto, Ontario, Canada.
² Division of Neurology, Temerty Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada.
³ Comprehensive Epilepsy Program, Krembil Research Institute, Toronto Western Hospital, Institute of Medical Sciences, University of Toronto, Toronto, Ontario, Canada.
⁴ Institute of Medical Sciences, University of Toronto, Toronto, Ontario, Canada.
⁵ Ann & Robert H. Lurie Children's Hospital of Chicago, Departments of Pediatrics and Neurological Surgery, Northwestern Feinberg School of Medicine, Chicago, Illinois, USA.
⁶ Kite Research Institute, University of Toronto, Toronto, Ontario, Canada.
⁷ Division of Neurology, The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada.
⁸ Department of Neuropsychology and Division of Brain, Imaging & Behaviour, Krembil Neurosciences Institute, University of Toronto, University Health Network, Toronto, Ontario, Canada.
⁹ Division of Neurology, Department of Pediatrics, BC Children's Hospital, University of British Columbia, Vancouver, British Columbia, Canada.
¹⁰ Division of Neurology, The Ottawa Hospital, University of Ottawa, Ottawa, Ontario, Canada.
¹¹ Division of Neurology, Kingston General Hospital, University of Kingston, Kingston, Ontario, Canada.
¹² São Paulo Integrated Neurology Institute, São Paulo, Brazil.
¹³ David and Judi Proctor Department of Mathematics, The University of Oklahoma, Norman, Oklahoma, USA.
¹⁴ Edmond J. Safra Program in Parkinson's Disease and Morton and Gloria Shulman Movement Disorders Centre, Toronto Western Hospital, UHN, Toronto, Ontario, Canada.
¹⁵ Dravet Syndrome Foundation, Cherry Hill, New Jersey, USA.
¹⁶ Dravet Syndrome Foundation, Madrid, Spain.
¹⁷ School of Psychology, University College Dublin, Dublin, Ireland.
¹⁸ Genetics & Genome Biology, The Hospital for Sick Children, Department of Molecular Genetics, University of Toronto, Toronto, Ontario, Canada.
¹⁹ Division of Neurology, New York University Langone Epilepsy Center, New York, New York, USA.
²⁰ Pediatric Neurology, Hospital das Clínicas, Faculty of Medicine of the University of São Paulo (HCFMUSP), São Paulo, Brazil.

PMID: 40762984
PMCID: PMC12605728
DOI: 10.1111/epi.18583

No abstract available

PubMed Disclaimer

Conflict of interest statement

D.M.A. received grant support from Dravet Syndrome Foundation; trial Support from Epygenix and Zogenix (UCB); And consultancy from Eisai, Biocodex, Stoke and Jazz; And serves on the medical advisory board for Dravet Syndrome Foundation. O.D. has equity and/or compensation from the following companies: Tilray, Tevard Biosciences, Regel Biosciences, Script Biosciences, Actio Biosciences, Empatica, Ajna Biosciences, Blackrock Neurotech, Emotiv, and Praxis Precision Therapeutics. He has received consulting fees or equity options from UCB Pharma and Ultragenyx. LIN UCB, PRAXIS, Abbott. J.A.A. is the President of the Dravet Syndrome Foundation Spain (DSF), and he and/or DSF have received grants and/or financial support from Jazz Pharma, UCB, Ovid Therapeutics, Encoded, Stoke, Takeda, Biocodex, Praxis, and StrideBio to help carry out some of DSF's founding activities or to provide consulting services. J.A.A. honoraria have always been donated directly or indirectly to the DSF. K.V. serves on São Paulo Research Foundation and receives support from Biocodex, Takeda, UCB, PRAXIS, Abbott, Prati‐Donaduzzi, ACHE, and Eurofarma. The remaining authors have no conflicts of interest. We confirm that we have read the Journal's position on issues involved in ethical publication and affirm that this report is consistent with those guidelines.

References

1. Selvarajah A, Sabo A, Gorodetsky C, Marques PT, Chandran I, Thompson M, et al. Dravet syndrome: from neurodevelopmental to neurodegenerative disease? Epilepsia. 2025;66:1975–1987. 10.1111/epi.18329 - DOI - PMC - PubMed
1. Sisodiya SM, Balestrini S, Berkovic SF, Bhatia KP, Clayton LM, Cross JH, et al. Is there really evidence for neurodegeneration in Dravet syndrome? Commentary on the publication by Selvarajah et al. Epilepsia. 2025. - PubMed
1. Fasano A, Borlot F, Lang AE, Andrade DM. Antecollis and levodopa‐responsive parkinsonism are late features of Dravet syndrome. Neurology. 2014;82:2250–2251. - PMC - PubMed
1. Kanatani M, Adachi T, Sakata R, Nishimura Y, Saito Y, Maegaki Y, et al. Dravet syndrome with parkinsonian symptoms and intact dopaminergic neurons: a case report. Brain Dev. 2021;43:486–489. - PubMed
1. Deuel L, Collins AE, Maa EH, Barr JP, Kern DS. Dravet syndrome and parkinsonism: a case report investigating the dopaminergic system. Neurology. 2019;93:595–596. - PubMed

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Evidence demands action: An invitation to share the burden of proof

Affiliations

Evidence demands action: An invitation to share the burden of proof

Authors

Affiliations

Conflict of interest statement

References

Grants and funding

LinkOut - more resources

Full Text Sources