The Epilepsy Deaths Register and the Epilepsy Deaths Register for Ireland are owned and managed by SUDEP Action. However, the information you provide is confidential and will only be accessed by the Epilepsy Deaths Register team. SUDEP Action is dedicated to the prevention of epilepsy deaths and specialises in supporting and working with families after a sudden epilepsy-related death. Within this document, when we refer to ‘we’ or ‘our’, we are referring to SUDEP Action. When we refer to ‘this website’ we are referring to ie.epilepsydeathsregister.org
SUDEP Action (registered charity 1164250 (England and Wales). SC047223 (Scotland). Epilepsy Bereaved (founded 1995) is part of SUDEP Action.
About this policy
Information we collect
The EDR and EDRI collect information on an opt-in basis. We only collect information from adults (aged 18 years and over) which is willingly given to the Epilepsy Deaths Register, to either provide information on an epilepsy related death, or to provide information and to continue on to our survey into epilepsy deaths. We do not ask for more information than we need for the purposes for which we are collecting it. We will always treat any sensitive information with the greatest care and process the information in accordance with the data protection act and with the agreement you have made.
Any personal information we ask about the deceased
You will be asked for some personal information about the person who died. This is only for the purposes of verifying the registration and for linking up multiple reports. Information that will be used for reporting will be in aggregated form and used for analysis only. Any reports from The Epilepsy Deaths Register will not identify either the person reporting or the person who died.
Any personal information about you
Any personal information you submit through this website is covered by law and practice of the United Kingdom as approved by the European Commission Implementation Decision of 28.6.2021 and Regulation (EU) 2016/679 of the European Parliament and the European Council on the protection of personal data by the United Kingdom:
- The UK General Data Protection Regulation, as incorporated into the law of the United Kingdom under the European Union (Withdrawal) Act 2018 and as amended by the Data Protection, Privacy and Electronic Communications (Amendments etc.) (EU Exit) Regulations 2019 and 2020.
- The UK Data Protection Act 2018 as amended by the Data Protection, Privacy and Electronic Communications (Amendments etc.) (EU Exit) Regulations 2019 and 2020.
- The Data Protection Act 1988 (DPA): the Privacy and Electronic Communications Regulations 2003 and the General Data Protection Regulation (GDPR) from May 2018.
We do not share email addresses or other contact details with any other organisation without your prior consent.
By submitting your details, you are able to register a death. The only personal information we collect about you is name and contact details etc. The Epilepsy Deaths Register team will only contact you in relation to research into epilepsy deaths, including the impact of bereavement, depending on what you have consented to regarding contact (as part of your online registration). If you think you have been contacted without having given your permission, then please contact us.
We will not pass on any personal information to any third party unless you have given permission for us to do so, for instance by agreeing to receive updates or information from us, or by agreeing beforehand to participate in a specific research project which requires us to forward your personal details.
The information you give us
Your co-operation is vital for research into epilepsy deaths, but is voluntary at all times. You are entitled at any stage or subsequently to ask that part or all of your registration be destroyed or deleted and not used in any future research. Any of your data which has already been analysed and used anonymously in study publications cannot be removed, but will not be included in any future publications.
Most of the information collected is for analysis purposes only and will only be used in aggregated form. Reports will not personally identify you or the person who died. It will be used for the sole purpose of The Epilepsy Deaths Register and will be presented as a report on anonymised data.
Once you have made a registration, the only people with access to any of your personal information are the Epilepsy Deaths Register team and occasionally our trusted website developers. The Epilepsy Deaths Register team have access only for data analysis and quality control purposes or contacting you if you have agreed for them to do so.
The members of the team which is kept accurate and up to date are:
- Jane Hanna OBE (since 2013)
- Tracy Cowdry Dip Couns. Registered Member MBACP (since 2013)
- Ben Donovan (since 2020)
- Vicky Masters-Read (since 2020)
- Newcastle University EDR Researchers (since 2019)
Information rights and choices
You have the right to see the personal information registered about you upon request. If the information is inaccurate, incomplete or irrelevant, you have the right to request that the information be corrected or deleted. In this regard please notify the EDR Data Secretariat by email at [email protected] who will liaise with the Epilepsy Deaths Register team.
We will do all that is reasonable to comply with your request as quickly as we can. Very simple requests such as correcting the information that we hold will be dealt with within the same working day where possible. In most other cases, requests will be dealt with within one month. In exceptional circumstances we may need to extend this if a request id particularly complex. Contacting the Secretariat will enable you to:
- Correct information we hold about you
- Make a request to access your personally identifiable information
Security of Data
This site is protected by a security certificate and has measures in place to protect the loss, misuse, and alteration of the information under our control.
Cookies are small pieces of information sent by a web server to a web browser, which enables the server to collect information from the browser. Essentially, it takes the form of a small text file deposited on your computer’s hard drive.
None of the cookies we use collect personal data about our website visitors. By using our website, you agree that we can place these types of cookies on your computer.
Ownership of this site
- This website is owned and operated by SUDEP Action, registered charity 1164250 (England & Wales), SC047223 (Scotland). Epilepsy Bereaved (founded 1995) is part of SUDEP Action.
- Our registered office is at 18 Newbury Street, Wantage, Oxfordshire, OX12 8DA. You can contact us at this address, by telephone on 01235 772850 or by sending an email to [email protected]
- We are supported in a number of areas of our work by educational grants from pharmaceutical companies. We do not promote any of the drugs manufactured by those or any other pharmaceutical companies.
- When we refer to “we” or “our”, we are referring to SUDEP Action. When we refer to “this website” we are referring to ie.epilepsydeathsregister.org
Reviewed July 2021