Participate in Research
What is research?
Research is defined as the creation of new knowledge and/or the use of existing knowledge in a new and creative way so as to generate new concepts, methodologies and understandings. This could include combining and analysing previous research so that it leads to new and creative outcomes. Medical and clinical research, such as what we do at the Fontan Registry, includes a wide range of fields, including physiology, health services, education, mental health, epidemiology, biology, chemistry, and pharmacology.
Through our research we aim to improve the lives of people living with a Fontan circulation. When deciding on a new research project we always start out with a clear research question we want answered. There are many ways to answer various research questions, but usually it involves looking at data (i.e., information of a particular type, such as everyone in the Registry's age). We gather this data in various ways. For example, it might be looking at data which we have already gathered in the Registry. It might also be the case that we need to gather new or up-to-date information. This can be done through surveys (self-reported), or through medical examinations and tests - for example, blood pressure, pathology results or imaging such as echocardiograms. We use different research methods to answer our research questions. One such method we use where we can be very sure that the results are accurate and true is called a clinical trial (see below).
Why should I participate in research?
It is important to participate in research, particularly Fontan Registry research, for a number of reasons. The field of Fontan research is still relatively new, and it is important that we expand our knowledge to help make the lives of those currently living with Fontan circulation better, but also the lives of those yet to come. Relatively speaking, there are few people in the world who have had the Fontan operation, so its important that everyone who can contributes to the research. In research we need a critical mass of numbers so that we can draw accurate conclusions. Through participating in research, you might also learn some new information about yourself, including up to date clinical information which we will always share with your cardiologist as well. There has been instances where we have identified something as part of research, which was then acted on quickly by treating physicians.
Finally, it can just feel good to participate! You are helping to move science forward and contributing to the knowledge base on Fontan outcomes. Your participation can help you, but also importantly so many other people.
Prof Yves d'Udekem gives an introduction to the different types of research the Fontan Registry does in this brief video
What is a clinical trial?
Clinical trials are research investigations in which people volunteer to test new treatments, interventions or tests as a means to prevent, detect, treat or manage various diseases or medical conditions. In clinical trials participants are often randomly assigned to one or more interventions. For example, this might include a treatment and control group, such as receiving an active drug treatment (treatment group) or sugar pill placebo (control group). To minimise bias, the participants will not know which group they are in, and often the treating doctors and researchers also do not know. This is called a double-blind randomised, placebo-controlled clinical trial, and is often considered as the gold standard for a clinical trial.
See the Fontan Registry's current clinical trials here