Guide for CGNR Participants

You might be wondering what it would be like to participate in the CGNR study, so we’ll take you through the process!

First, your doctor will ask you if you want to participate in the study when you go in for a check-up. If you are interested, either they or the study coordinator will take you aside and explain what participating would involve. After you ask all your questions you will be asked to sign a consent form. Signing this form means that you understood everything that was explained to you and that you’re willing to participate!

There will be a total of five planned visits that will happen at the same time as you visit your nephrologist for a clinical visit. There’s room for more visits if you need to see your doctor in between. Visits will take place approximately every six months, with all visits to be completed within two years.

V0/V1 Screening/Enrolment Visit

This visit is the very first time you’ll be introduced to the CGNR study! The site study coordinator will ask you some questions to see if you’re a good fit. If you are, you’ll be explained the terms of participating and be asked to sign a consent form. Once you’re enrolled you’ll get study ID and the first biospecimen samples will be collected. This is the only visit where some DNA will be collected, too. This will help us see if you have any genetic markers for kidney disease. You will also fill out your first quality of life questionnaires.

V2 Follow-Up Visit

Here you will have your height and weight recorded, your blood pressure taken and biospecimen samples collected. You will also fill out your quality of life questionnaires.

V3 Follow-Up Visit

Here you will have your height and weight recorded, your blood pressure taken and biospecimen samples collected. You will also fill out your quality of life questionnaires.

V4 Follow-Up Visit

Here you will have your height and weight recorded, your blood pressure taken and biospecimen samples collected. You will also fill out your quality of life questionnaires.

V5 Follow-Up Visit

One last time, you will have your height and weight recorded, your blood pressure taken and biospecimen samples collected. You will also fill out your quality of life questionnaires. This is your last visit – congratulations! Thank you for contributing to the future of glomerulonephritis research.

UNS Unscheduled Visit

This visit is for any unplanned visit when you need to see your doctor. If you’re having a flare up, for example, you’ll see your nephrologist sooner than your usual follow-up appointments. CGNR hopes to collect as much data as possible to improve patient care. It is therefore important to collect samples when you’re not feeling well. All the usual “follow-up visit” samples will be collected here as well.

When we say that we will collect biospecimens, we mean blood, urine and a throat swab. This will be done using sterile equipment and the specimens we collect will be processed in the lab at later stored in freezers at University Health Network in Toronto.

Each biospecimen lab kit contains two packages. One is called “collection” and the other is called “processing”. They look like this:

But what’s the difference? The collection kit contains items that will be used to obtain biospecemin samples. The processing kit will contain items used by the hospital to process these samples.

Here are some of the items that you can find in your collection kit:

This tongue depressor will be used to keep your tongue out of the way when the throat swab is used to reach your tonsils.

This is the DNA tube which will be used to collect your blood at the first visit (V0/V1). Since DNA doesn’t change, this sample only has to be collected once.

This is the DNA tube which will be used to collect your blood at the first visit (V0/V1). Since DNA doesn’t change, this sample only has to be collected once. The number on the tube is used to keep your information private. The first 3 numbers correspond to the site. 220 is the site number for Calgary. The last 4 numbers are your patient ID. They are labeled consecutively based on your recruitment. For example, the first patient at Calgary will have a patient ID of: 2200001

This is a cryovial. There are 21 of them per processing kit. They’re used in the laboratory to store small samples of blood or urine.

Remember that your participation in this study is completely voluntary. You may withdraw your participation at any time and this won’t affect your relationship with any study affiliated staff, your nephrologist or your hospital site.

There are small risks and benefits to participating that will be explained to you at your first visit. If you have any questions please visit our patient engagement page to contact one of the study’s core coordinators.