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Patient and practitioner workshops for an intellectual disabilities and epilepsy neuropsychiatric genetic research database register: Ethical dilemmas for study design.

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Title: Patient and practitioner workshops for an intellectual disabilities and epilepsy neuropsychiatric genetic research database register: Ethical dilemmas for study design.
Authors: Allard J; Cornwall Intellectual Disability Equitable Research, Cornwall Partnership NHS Foundation Trust Truro, TR1 3FF, UK; Cornwall Intellectual Disability Equitable Research, University of Plymouth, Truro, TR1 3FF, UK., Bilkey D; Cornwall Intellectual Disability Equitable Research, Cornwall Partnership NHS Foundation Trust Truro, TR1 3FF, UK; Cornwall Intellectual Disability Equitable Research, University of Plymouth, Truro, TR1 3FF, UK., McLean B; Cornwall Intellectual Disability Equitable Research, Cornwall Partnership NHS Foundation Trust Truro, TR1 3FF, UK; Cornwall Intellectual Disability Equitable Research, University of Plymouth, Truro, TR1 3FF, UK., Bowman P; Cornwall Intellectual Disability Equitable Research, Cornwall Partnership NHS Foundation Trust Truro, TR1 3FF, UK., Staples C; Cornwall Intellectual Disability Equitable Research, Cornwall Partnership NHS Foundation Trust Truro, TR1 3FF, UK., Watkins L; Cornwall Intellectual Disability Equitable Research, University of Plymouth, Truro, TR1 3FF, UK., Simpson A; National Centre for Mental Health Cardiff CF24 4HQ, UK., Boardman L; Cornwall Intellectual Disability Equitable Research, Cornwall Partnership NHS Foundation Trust Truro, TR1 3FF, UK., Mitchell S; Cornwall Intellectual Disability Equitable Research, Cornwall Partnership NHS Foundation Trust Truro, TR1 3FF, UK; Cornwall Intellectual Disability Equitable Research, University of Plymouth, Truro, TR1 3FF, UK., Lennard S; Cornwall Intellectual Disability Equitable Research, Cornwall Partnership NHS Foundation Trust Truro, TR1 3FF, UK; Cornwall Intellectual Disability Equitable Research, University of Plymouth, Truro, TR1 3FF, UK., Shankar R; Cornwall Intellectual Disability Equitable Research, Cornwall Partnership NHS Foundation Trust Truro, TR1 3FF, UK; Cornwall Intellectual Disability Equitable Research, University of Plymouth, Truro, TR1 3FF, UK. Electronic address: Rohit.shankar@plymouth.ac.uk.
Source: Seizure [Seizure] 2026 Jul; Vol. 139, pp. 144-151. Date of Electronic Publication: 2026 Apr 12.
Publication Type: Journal Article
Journal Info: Publisher: Elsevier Country of Publication: England NLM ID: 9306979 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1532-2688 (Electronic) Linking ISSN: 10591311 NLM ISO Abbreviation: Seizure Subsets: MEDLINE
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  Data: Patient and practitioner workshops for an intellectual disabilities and epilepsy neuropsychiatric genetic research database register: Ethical dilemmas for study design.
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  Data: <searchLink fieldCode="AU" term="%22Allard+J%22">Allard J</searchLink>; Cornwall Intellectual Disability Equitable Research, Cornwall Partnership NHS Foundation Trust Truro, TR1 3FF, UK; Cornwall Intellectual Disability Equitable Research, University of Plymouth, Truro, TR1 3FF, UK.<br /><searchLink fieldCode="AU" term="%22Bilkey+D%22">Bilkey D</searchLink>; Cornwall Intellectual Disability Equitable Research, Cornwall Partnership NHS Foundation Trust Truro, TR1 3FF, UK; Cornwall Intellectual Disability Equitable Research, University of Plymouth, Truro, TR1 3FF, UK.<br /><searchLink fieldCode="AU" term="%22McLean+B%22">McLean B</searchLink>; Cornwall Intellectual Disability Equitable Research, Cornwall Partnership NHS Foundation Trust Truro, TR1 3FF, UK; Cornwall Intellectual Disability Equitable Research, University of Plymouth, Truro, TR1 3FF, UK.<br /><searchLink fieldCode="AU" term="%22Bowman+P%22">Bowman P</searchLink>; Cornwall Intellectual Disability Equitable Research, Cornwall Partnership NHS Foundation Trust Truro, TR1 3FF, UK.<br /><searchLink fieldCode="AU" term="%22Staples+C%22">Staples C</searchLink>; Cornwall Intellectual Disability Equitable Research, Cornwall Partnership NHS Foundation Trust Truro, TR1 3FF, UK.<br /><searchLink fieldCode="AU" term="%22Watkins+L%22">Watkins L</searchLink>; Cornwall Intellectual Disability Equitable Research, University of Plymouth, Truro, TR1 3FF, UK.<br /><searchLink fieldCode="AU" term="%22Simpson+A%22">Simpson A</searchLink>; National Centre for Mental Health Cardiff CF24 4HQ, UK.<br /><searchLink fieldCode="AU" term="%22Boardman+L%22">Boardman L</searchLink>; Cornwall Intellectual Disability Equitable Research, Cornwall Partnership NHS Foundation Trust Truro, TR1 3FF, UK.<br /><searchLink fieldCode="AU" term="%22Mitchell+S%22">Mitchell S</searchLink>; Cornwall Intellectual Disability Equitable Research, Cornwall Partnership NHS Foundation Trust Truro, TR1 3FF, UK; Cornwall Intellectual Disability Equitable Research, University of Plymouth, Truro, TR1 3FF, UK.<br /><searchLink fieldCode="AU" term="%22Lennard+S%22">Lennard S</searchLink>; Cornwall Intellectual Disability Equitable Research, Cornwall Partnership NHS Foundation Trust Truro, TR1 3FF, UK; Cornwall Intellectual Disability Equitable Research, University of Plymouth, Truro, TR1 3FF, UK.<br /><searchLink fieldCode="AU" term="%22Shankar+R%22">Shankar R</searchLink>; Cornwall Intellectual Disability Equitable Research, Cornwall Partnership NHS Foundation Trust Truro, TR1 3FF, UK; Cornwall Intellectual Disability Equitable Research, University of Plymouth, Truro, TR1 3FF, UK. Electronic address: Rohit.shankar@plymouth.ac.uk.
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  Data: <searchLink fieldCode="JN" term="%229306979%22">Seizure</searchLink> [Seizure] 2026 Jul; Vol. 139, pp. 144-151. <i>Date of Electronic Publication: </i>2026 Apr 12.
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              Text: 2026 Jul
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