Epilepsy and non prescribed Cannabinoids treatment

  • Research type

    Research Study

  • Full title

    Epilepsy and over the counter Cannabinoids for seizures; a patient & family perspective

  • IRAS ID

    296766

  • Contact name

    Vandna Gandhi

  • Contact email

    Vana.gandhi@ldh.nhs.uk

  • Sponsor organisation

    Bedfordshire Hospitals NHS trust

  • Duration of Study in the UK

    0 years, 3 months, 1 days

  • Research summary

    Epilepsy and over the counter Cannabinoids for seizures; a patient & family perspective"

    Aim : There is no enough evidence available in the literature for safety of Cannabinoids use and effect in paediatric patients with refractory epilepsy . We are aiming in this study to collect more information on the experience of patients and families with non prescribed Cannabinoids treatment . This may help improve our understanding of safety of its use and perceived efficacy in seizure control among parents and carers .

    Methods: A qualitative survey questionnaire , where study population will be selected randomly from a list of paediatric epilepsy patients who have been managed by Luton and Dunstable hospital epilepsy service . Including both who are currently using over the counter cannabinoids treatment , or have been on and then stopped , or who haven’t used it before .
    A survey questionnaire consisting of ten questions has been developed on an online survey software ; Survey Monkey . Questions are focusing on the demographic background( age-ethnicity-socioeconomic status ) , the clinical background ( epilepsy history and used interventions for controlling seizures), and experience of using over the counter Cannabinoids products for epilepsy . Research team is going to contact parents/guardians of epilepsy patients by a phone call to confirm their parental responsibility for the child , if the child still have epilepsy, then obtain their informed consent for the study , and to collect and store their emails. We will need also to confirm ,if parents have enough command of English language and IT skills sufficient for filling the survey. Then , anonymous data to be collected through distribution of the survey questionnaire link among these families from a generic work email. Advice for participants will be clear on the survey preamble not to include any identifiable personal information in their answers.

  • REC name

    North West - Liverpool Central Research Ethics Committee

  • REC reference

    21/NW/0142

  • Date of REC Opinion

    18 May 2021

  • REC opinion

    Unfavourable Opinion