Essential ACHD is an educational website for those wishing to learn about Adult Congenital Heart Disease.

We publish articles that describe the presentation, investigation, treatment and outcomes of real patients, both children and adults, with congenital heart disease. 

You may be reading this because your medical team have asked if you would give your permission to have information about yourself (or your child, ward or relative) included in an article on Essential ACHD. There are a number of factors that you should consider before deciding whether or not you are happy to consent to this.

  • Any information about you that is published on Essential ACHD will be publicly available on the internet without restriction. 
  • Your name will not be attached to the article and every attempt will be made to ensure your anonymity. However, you should understand that complete anonymity cannot be guaranteed. It is possible that somebody somewhere, for example a relative or somebody who looked after you in hospital, could identify you.
  • You will be asked to read and sign an information sheet and consent form (click here to download). A copy of the consent form will be sent to us at Essential ACHD and we will keep it on a secure hospital server. However, even if you sign the consent form you may revoke your consent at any time before or after publication. If you do so beforehand no information about you will be published. If you do so after publication the article containing information about you will be removed from Essential ACHD.

If you would like to be informed of the web address for the article once it is published please provide your email address clearly on the consent form. We will not pass on your email address to anyone else and will not contact you unless we need to do so in relation to the article.

If there is an existing article about you on ACHD and you either have concerns about it or would like it removed then please contact us by email at leedsachd@gmail.com.