What question did this study set out to answer?

The research aims to explore ethical challenges in designing studies for individuals with intellectual disabilities and epilepsy.

April 15, 2026Open Access

Patient and Practitioner workshops for an Intellectual Disabilities and Epilepsy Neuropsychiatric Genetic Research Database Register: Ethical dilemmas for study design

Key Points

The research aims to explore ethical challenges in designing studies for individuals with intellectual disabilities and epilepsy.
Conducted workshops with patients and practitioners
Focused on ethical dilemmas and communication of research
Highlighted the need for flexible study protocols
Identified key themes around ethical concerns for research delivery
Emphasized the importance of patient-centred approaches
Outlined challenges in meeting ethics committee requirements

Abstract

person-centred approach.A specific "hard to reach" population of PwID and Epilepsy were also discussed (theme 5.) ConclusionThemes build on previous work addressing the need for flexible and nuanced approaches to ensure research with PwID is communicated appropriately and delivered in inclusive, ethical ways.These approaches raise challenges and ethical dilemma for researchers defining study delivery protocols and processes that fit NHS Research Ethics Committee (REC) application and approval processes.

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Patient and Practitioner workshops for an Intellectual Disabilities and Epilepsy Neuropsychiatric Genetic Research Database Register: Ethical dilemmas for study design

Key Points

Abstract

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