Patient registry & samples

 

Patient registry

A key component in our overall fight against EHE is the confidential EHE Patient Registry that we continue to build. This registry has been established, in collaboration with medical and research specialists, to collate important social and medical information and data from all patients diagnosed with EHE. The collation of these data is invaluable for research and medical specialists as they look for statistically significant trends that will improve understanding of EHE.

We strongly encourage all new patients to join the Registry and provide their information to the growing data base. The Registry is held on the CRAVAT website at what is called the Patient Crossroads. The following link will connect you to the Registry where you can create an account and enter your details.

 

Registry Link

 

Tissue samples

In addition to the Patient Registry information, many of our members are also very keen to provide tissue samples for EHE research. A key component of EHE research is the development of cell models to test development and treatment hypotheses relating to EHE. If you are an EHE patient and your treatment will involve the surgical removal of tumour tissue, please consider donating this tissue for use in the research programme. If you do want your tissue samples to be available, you should contact us (or your appropriate EHE foundation if you live outside the UK) in advance of surgery, using the contact below, to discuss how the tissue samples may be made available. Finally, and although a difficult issue to consider, we have also had members who, on losing their fight against EHE, have left their tissue for use in progressing the EHE research programme in the hope that this may lead to advances in understanding and combatting EHE. Again, contact with ourselves (or your appropriate EHE foundation) using the contact below will allow us to provide further information and possibly assist in making all the appropriate arrangements.

 

Contacts

Contact EHERCC through our CONTACT page.