Your co-operation is vital 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.
Most of the information collected is for analysis purposes only and will only be used in aggregated form. It is not identified to you personally or to the person who has died. It will be used for the sole purpose of the Epilepsy Deaths Register.
Only certain employees of SUDEP Action have access to the information you provide us. They have access only for data analysis and quality control purposes. Once you have made a registration the only people with access to any personal information that you give to the Epilepsy Deaths register are the members of the Epilepsy Deaths Register team. The Epilepsy Deaths Register team at SUDEP Action is the same team that has involved bereaved families in research interview studies that have been reported at the Association of British Neurologists and the European epilepsy congress during 2012. Confidentiality is part of their professional training and day to day expertise. The members of the team are Karen Osland Dip Couns MBACP, Tracy Cowdry Dip Couns.
Our web 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.
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
The only personal information we collect about you is name and contact details etc. You will be asked for personal information so that the Epilepsy Deaths Register team can invite you to take part in a follow-up survey or research study into epilepsy deaths. The Epilepsy Deaths register team will only contact you if you have consented to this 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 this is a research project that you have expressly agreed to participate in.
Any answers you give to any survey run by the Epilepsy Deaths Register team at SUDEP Action will remain confidential unless you specifically give your consent to the contrary. No information is collected during any survey without your prior knowledge and consent.
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 us by email to firstname.lastname@example.org. In this case we shall do all that is reasonable to comply with your request as quickly as we can.
Finally, SUDEP Action is committed to meeting the requirements of the Data Protection Act 1998.
If you have any questions about this privacy statement or the Epilepsy Deaths Register please email us at email@example.com.