ORCID
- Rohit Shankar: 0000-0002-1183-6933
- Lance Watkins: 0000-0002-0447-5906
Abstract
BackgroundThere is a need for more research studies focussed on People with ID (PwID) and Epilepsy and for the design of these studies to be shaped by this complex and vulnerable population and those who care for and support them.AimsTo develop understanding as to how a future NHS genetic research database register for PwID and Epilepsy should be conducted in a way which is inclusive, suitable and appropriate for them, their carers and the NHS settings where the research would be undertaken.MethodsThree workshops were completed with 17 formal participants: (1) PwID and Epilepsy (n2); (2) carers of PwID and Epilepsy (n6); (3) NHS practitioners working with PwID and Epilepsy (n9). Patient and public involvement and engagement and co-production methods were applied. Workshop transcription and researcher notes were analysed for themes using ethnographic techniques.ResultsFour key themes identified were: (1) Comprehension and how to achieve it; (2.) The value of participating and how to explain it; (3) Perception of risks and reservations and how to help reduce them; (4.) A flexible, 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.
DOI Link
Publication Date
2026-04-12
Publication Title
Seizure: European Journal of Epilepsy
Volume
139
ISSN
1059-1311
Acceptance Date
2026-04-11
Deposit Date
2026-04-13
Funding
This work was funded by an Investigator Initiated grant (IIS) from Angelini Pharma RS has received institutional research, travel support and/or honorarium for talks and expert advisory boards from LivaNova, UCB, Eisai, Veriton Pharma, Bial, Angelini, UnEEG and Jazz/GW pharma outside the submitted work. He holds or has held competitive grants from various national grant bodies including Innovate, Economic and Social Research Council (ESRC), Engineering and Physical Sciences Research Council (ESPRC), National Institute of Health Research (NIHR), NHS Small Business Research Initiative (SBRI) and other funding bodies including charities all outside this work. No other author has any declared conflict of interest.
Keywords
Co-production, Genetic disorders, Neurodevelopmental conditions, Patient centred approach, Research exclusion, Research inclusion
Creative Commons License
This work is licensed under a Creative Commons Attribution 4.0 International License.
First Page
144
Last Page
151
Recommended Citation
Shankar, R., Allard, J., Bilkey, D., McLean, B., Bowman, P., Staples, C., Watkins, L., Simpson, A., & Boardman, E. (2026) 'Patient and Practitioner workshops for an Intellectual Disabilities and Epilepsy Neuropsychiatric Genetic Research Database Register: Ethical dilemmas for study design', Seizure: European Journal of Epilepsy, 139, pp. 144-151. Available at: 10.1016/j.seizure.2026.04.008
