GARDIAN is a global registry and open to all nGD patients and their caregivers worldwide
Wondering if you should register?
The first patient to do so, Bailey, and her mother Amanda, explain why they feel GARDIAN is so important.
Thank you for your interest in participating in the GARDIAN Registry.
GARDIAN is a registry that will let you tell us how nGD impacts you, or the person you care for. By sharing your story through adding your disease information to the registry, we will be able to support the development of new and better medicines for nGD. We will be able to improve the understanding of nGD that will help improve the care that patients receive and reduce the time to diagnosis.
We are already a strong and close community, providing support and advice to each other every day, so let’s now come together even more and help existing and new patients and their families who receive a diagnosis of nGD, by joining the registry. Sign up now.
GARDIAN will collect data directly from patients or caregivers. The data will be anonymised. Patients (or caregivers on behalf of patients, where applicable) must meet all of the following inclusion criteria to be eligible:
- Patient with confirmed GD3 diagnosis or primary or co-primary caregiver of a patient with a confirmed GD2 or GD3 diagnosis.
- Access to an internet-connected mobile device (e.g. smartphone, tablet) or computer with a good internet connection.
- To register, we recommend you use a tablet or computer as the information is easier to read on a bigger screen.
- A working email account. Your details are safe with us and we will use your email address only to communicate with you about the Registry.
- Able to read and understand one of the study languages (English, French, German, Spanish, Japanese, Chinese, Arabic).
- Willing to sign an opt-in consent document indicating that the patient has been informed of all pertinent aspects of the registry.
You can also call +44 (0)1453 796402 for assistance.
Please make a note of these details before proceeding.
We have also created a visual guide to help you in the process.
You can download it here.
Please also ensure that you meet all of the above requirements and you have all the necessary documentation before proceeding. You will be required to upload proof of diagnosis, e.g. genetic results, enzyme results and/or a physician’s letter/email that mentions the diagnosis or treatment, so please have this ready.
You only need one document with your name and genotype as proof of nGD. You do not need to provide all the listed documents. This document does not have to be new; it can be from when you first got your diagnosis. The document will not be kept in the registry. It will be deleted after you have been approved for the registry.
If you are unsure whether your documentation is acceptable, please contact us by one of the above methods and we will let you know. Or simply use the chat function on the bottom right of this page.
Once you click that you are eligible to participate in GARDIAN, the browser will take you to the Aparito secure registry portal where you will start the registration process.
For more information, visit our FAQ page.