February 21, 2019
Clinical trials are carefully regulated research studies with investigational drugs or therapies that may help physicians and scientists better understand a disease or develop possible treatments. At any given time, there are thousands of clinical trials being conducted around the world for various diseases. Currently, there are ongoing trials for C3 glomerulopathy (C3G).
As a patient or caregiver, you may be considering this option at some point in your treatment journey. But this is not a decision that should be made lightly. Below, we examine some pressing questions and answers about clinical trials.
This is an important question to ask about participating in a clinical trial. As you consider this option, you should also consider your motives and manage expectations. While you may receive some benefit from a trial, there is no guarantee. The only promised benefit is that you would be helping to advance medical knowledge and disease understanding. By setting your expectations early on and being realistic about the potential outcomes, you can make sure that you are participating for the right reasons. You should discuss your interest and any considerations regarding participation in a clinical trial with your doctor.
Prior to joining a trial, you should have a good understanding of your disease and of the science behind the clinical trial. This means understanding how the trial will be run; what the investigational drug is and how it works; what tests, exams, and procedures would be required as a participant; and how much time is involved. Before making any decisions, you should also discuss the options with your doctor as he or she should be able to help determine if a trial is right for you.
If you decide to join a clinical trial, there will be some level of ongoing commitment from you, your family members, or your caregiver. What is asked of you can vary based on the specific trial but could include: routine follow-up appointments, dietary restrictions, taking an investigational drug, and likely numerous medical procedures to collect samples and monitor your health and safety. Before you join, you should know exactly what will be asked of you and consider the impact those requirements will have on your daily life.
By joining a clinical trial, you could potentially gain access to investigational drugs or treatments that have not yet been approved by regulatory authorities and are not available by prescription. But as with any medical test or procedure, participation in a clinical trial also involves possible risks. Your doctor should be able to help you evaluate the pros and cons and help you to determine if the potential benefits of the trial outweigh the level of risk involved. There are several factors that will impact that decision including, but not limited to, your age, disease severity, and prior treatments. Every clinical trial is different and should be discussed with your doctor.
Since you’ll likely be seeing and treated by other healthcare providers throughout the trial, it is important to talk to your doctor to determine how your regular care will be impacted. Some trials may allow you to continue with your current treatments while others could require a medication adjustment in order to participate. It is important to discuss these changes with your regular doctor to evaluate how they could impact your care. You will also want to discuss how your routine care will resume after the trial is finished.
Refer to the WeC3G clinical trials page to learn more about clinical trials and to find a list of ongoing studies for C3G.
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