Narcolepsy UK has agreed to assist in the completion of an international research project on the burden of narcolepsy and idiopathic hypersomnia sponsored by the pharmaceutical company Takeda (USA). The goal of this research is to better understand the impact of narcolepsy and idiopathic hypersomnia on quality of life, health care, and personal costs.
Six countries in Europe, the United States and Canada are participating in the study, with the research in the UK conducted under the responsibility of Prof. Guy Leschziner, Guy’s and St Thomas’ NHS Trust (GSTT), and the project leader EHE International GmbH, represented by Dr Gisela Kobelt. The study has received a favourable opinion by the research ethics committee (Berkshire REC) on April 4, 2023 with the study number IRAS 325690.
To participate in the project, we ask you to complete an electronic questionnaire via computer, tablet or smartphone which the project team anticipates will take about 30 minutes of your time. Your answers will remain entirely anonymous, and your participation will in no way influence your treatment.
You may complete the questionnaire in as many stages as you require but you MUST save your answers if you take a break, by choosing a login and password. These will be destroyed when you have finalised and sent the questionnaire, preserving your anonymity.
To start the survey, use this link http://enkat.net/narc_ukpat or scan this barcode which will take you directly to the study site and the questionnaire.
Please take great care to answer all questions, as the anonymous nature of this study does not allow for filling in missing data. Incomplete questionnaires and/or without consent will have to be excluded.
If you have any questions or comments regarding the questionnaire, please contact the following –
Sleep Research Team, Guy’s & St Thomas’ NHS Foundation Trust
Tel: 0207 188 8070
(September 2023)