Patient and Carer Experiences of Dravet Syndrome or Lennox-Gastaut Syndrome
What's it about?
We are looking for caregivers of individuals aged 2 and above with Dravet Syndrome (DS) or Lennox-Gastaut Syndrome (LGS) to take part in research. The study aims to explore the impact of these conditions on people’s lives and understand the experiences of patients, and their caregivers, with some of the treatments for DS and LGS.
The research is conducted by an independent research consultancy, Acaster Lloyd Consulting Ltd, based in London, United Kingdom.
What will I be asked to do?
The research team will first ask you a few short questions over email to confirm you are eligible for the study. These questions should take no longer than 5 minutes to complete. If you are eligible, you will be invited to take part in an interview via telephone or online video call (Skype/Zoom). The interview will last around one hour. Prior to the interview, you will also be asked to complete a brief questionnaire and return it to the researcher (via email or post). The questionnaire should take no longer than 10 minutes to complete.
As a token of appreciation for your time, you will receive a payment of £20 for your participation in the study.
What will you do with my data?
Your questionnaire responses will be used to help us better understand relevant details related to the treatment history of the person you care for, which will provide a basis for the discussions during the interview.
Interviews will be audio-recorded and transcribed verbatim. All data will be anonymised so that the identity of study participants will not be revealed in any reports. Data from all study participants will be combined and analysed together. You will be free to withdraw your consent to participate in the study, and request the deletion of your data, at any time.
The anonymised study results will be used to help healthcare decision makers understand the impact of DS and LGS on people’s lives and the effects of some of the treatments for these conditions. We anticipate that the study results will be presented at academic conferences and published in peer-reviewed medical journals. We also plan to share these results back with the patient organisations supporting the DS and LGS communities
How do I get involved?
If you are interested in taking part in the study, please contact Hanna Skrobanski: