Overview

If you’re having electrochemotherapy your healthcare team will ask for your permission to store your data in the InspECT registry.

The InspECT registry is a list of information about people who have electrochemotherapy. It helps researchers understand the short and long term effect of electrochemotherapy on cancer.

InspECT stands for International Network for Sharing Practice in Electrochemotherapy.

Information that is collected

The information we collect can include:

• clinical examination, such as where the cancer is
• medical history
• size of your cancer
• photos of your cancer
• the type of electrochemotherapy you have
• any anaesthetic you’ve been given

It will not collect your personal information such as your name, address or date of birth.

Confidentiality

The information that we collect for the registry will be kept confidential. Any information about you will have a number instead of your name. Only your surgeon and their team will know what your number is.

The InspECT registry follows the International Conference on Harmonization of Good Clinical Practise (ICH-GCP) guidelines. These guidelines protect you and your data. They make sure your rights, safety and wellbeing are put first.

Taking part in the InspECT registry

You will be asked if you give permission for your health information to be stored in the registry.

By taking part it will help researchers looking at how well electrochemotherapy works. It will also help make improvements in treatment and care.

Giving your permission (consent)

Taking part in the InspECT registry is voluntary, you do not have to take part. If you do not want to take part your care will not be affected.

You can also decide to stop sharing your information with the InspECT registry at any time, for any reason.

What to expect

If you take part, you will be asked to return to the clinic every 4 to 6 weeks for at least 16 weeks. At these appointments, your healthcare team will look at:

• clinical evaluation of your health, such as any side effects you have
• the size of your cancer
• how your cancer has responded to treatment
• photos of your cancer, new photos may be taken

If your healthcare team think it will benefit you, you may be offered more electrochemotherapy treatment.