Information for Patients

Advanced research in a caring environment

At the UCD Clinical Research Centre (UCD CRC) we want to conduct advanced research in a caring environment to improve medical treatment for patients with a wide range of illnesses.

Our research is a multidisciplinary team effort. Doctors, nurses, technicians, and scientists, work in partnership with patients towards the common goal of developing new cures for illnesses.

Patients play the key role. Through their involvement in research studies, they make a great contribution towards our understanding of how diseases work and help us to improve patient outcomes in the future.

Patient Voice
Oct 2021

“My name is Steven and I’m from Cork. I was diagnosed with hypophosphataemia (later called XLH - X-Linked Hypophosphatemia, an inherited disorder characterised by low levels of phosphate in the blood) in 1988. I participated in a clinical trial run by UCD CRC in St Vincent’s Hospital, due to chronic bone pain. I benefitted immensely from the trial. At my worst, I could not walk but am now quite active. Thanks to Prof Rachel Crowley, Consultant Endocrinologist, St Vincent’s Hospital & Research Nurses at UCD CRC for aiding my recovery and their help and advice over the past five years.”

Why Research Matters

The aim of Clinical Research is to find new treatments that can improve patient health. Research studies try to find out what causes disease and to test how well new medical treatments work for people. Each study answers scientific questions to find better ways to prevent, screen for, diagnose and treat diseases. Here at the UCD CRC we carry out research in many disease areas, including infectious diseases, respiratory, rheumatology, and neurology, as well as many others. 

Taking Part in a Research Study

There are several steps involved in taking part in a study which are explained here:

Step 1: Request for participation

Research staff at the centre will chat to you about studies that may be of interest to you. If you are interested in a study, they will explain all the necessary information and the steps for how you can get involved.

Step 2: Consent

Once we have asked you to participate in a study, the next step is to provide you with all the information you will need to make up your mind. We will provide you with two forms: a Participant Information Leaflet (PIL) and a Consent Form. The PIL will explain the study in detail, setting out:    

  • Why the study is taking place
  • How long it will take
  • What steps are involved in the study
  • What are the benefits of the study
  • What are the possible risks involved

If you then feel happy to participate, we will ask you to sign a Consent Form. The Consent Form is an agreement between you and the research team that details:

  • That you have read and understood the Participant Information Leaflet (PIL)
  • That you agree and understand what the study is about and why you are taking part
  • That you agree and understand how your data is being used, stored and processed
  • That you can withdraw from the study at any time

Step 3: Participation

Taking part in a study usually involves visiting our centre at certain times for clinic visits. The research team will let you know how often and when you will need to attend the centre. A doctor or nurse involved in the study will be available to respond to any questions or concerns you might have at any time.

Why Take Part

There are many advantages to taking part in a clinical study. You will be observed very closely throughout and always have access to a team of experts. However, there are much wider benefits. The role of the participant in the trial is central, and through your participation, we hope to increase our understanding of many of the world’s most serious illnesses.

You are joining a team whose goal is to create new medical knowledge, with the aim of finding new and better ways to treat or even cure serious diseases. By taking part, each participant is making a valuable contribution to improving the health care of our own and future generations.

Who is Involved

In every study, a Principal Investigator is appointed – this is the person in charge of the study. In many cases a research nurse is also appointed as Study Coordinator, with the responsibility of managing the day to day running of the study. Together with scientists and other staff, they will look at the information that we gather through the studies in their efforts to treat and cure disease.

Each participant’s progress is monitored closely by the medical team, the study doctors, and the coordinator. People taking part in studies have a direct line of contact to the study team - we are always available to answer your questions.

What About Confidentiality?

If you agree to take part in a research study, you will be given a unique study number. The information collected during the study will be stored in a computer database. Your information will be identified by the study number and never by name, to maintain confidentiality. The results of the study may be published in medical literature and scientific journals or presented at national or international conferences. No identifying participant information will be revealed.

If you would like more information about clinical trials, how you can be involved, or want to share your experience with us, please contact the CRC email (crc@ucd.ie) and we will put you in touch with a member of our Research Team.