Information for Research Participants

Advanced Research in a Caring Environment

Welcome to the UCD Clinical Research Centre (CRC). Here at the centre we undertake advanced research in a caring environment that aims to advance medical treatment for all patients suffering from a wide range of illnesses.

Our research is a truly multidisciplinary team effort. Doctors, nurses, technicians, scientists and of course, patients work together towards the common goal of developing new cures for serious illnesses.

Patients in particular play the key role. We believe that through their involvement in research studies, patients are making an immense contribution towards our understanding of the mechanism of disease and greatly influence our ability to improve patient outcome in the future.

More Information for Participants

I hope that the information in this website will help your understanding of clinical research. However, if you would like more information, please don’t hesitate to contact any member of our research team and we will be happy to meet with you and answer any of your questions.

For further information you can download our information booklet: UCD Clinical Research Centre Information Booklet

Why Research Matters

The objective of medical research is to discover new treatments that can improve patient health. Research studies try to identify what causes diseases and to test how well new medical approaches work for people. Each study answers scientific questions to find better ways to prevent, screen for, diagnose and treat diseases.

Two hundred and fifty years ago a Scottish naval surgeon’s mate, James Lind, carried out a series of experiments to discover the cause of scurvy. He observed the symptoms, which included loose teeth, bleeding gums and haemorrhages and treated six pairs of sailors with different remedies. Those fed citrus fruits experienced a remarkable recovery and Lind went on to qualify in medicine and to publish the findings of his extensive research into the effect of diet on the health of seamen. The subsequent issuing of lemon juice to ships effectively wiped out scurvy among sailors.

Ever since then, research studies have played a major role in healthcare. Every treatment used today has been the subject of a research study.   For example, in cancer care, the current balance of radiotherapy, chemotherapy, surgery and complementary therapies is based on trials which tested the treatments themselves and the best ways of using them. This has meant that many people with cancer and indeed many other illnesses, live longer and have a better quality of life.

We at the UCD CRC are committed to medical research to ensure that we develop even better ways to treat disease.

What is Translational Research?

Translational research aims to translate research findings into real benefits for real patients. In order to have a positive impact on people’s health, scientific discoveries must be translated into practical applications. Such discoveries typically begin at the laboratory “bench” with basic research, in which scientists study disease at the molecular (cell) level, then progress to the clinical level, or to the patient’s bedside. This is why translational research is often called the “bench to bedside” approach.

Illness affects us all. The medical treatments we receive today are based on scientific research and patient observation carried out by doctors and medical researchers over decades.  Translational research makes this link in order to identify new and better ways to treat and cure diseases. 

The Department of Health has recognised the role of research as one of the key factors in promoting health, combating disease, reducing disability and improving the overall quality of care for patients.

Types of Research

To gain a holistic understanding of diseases and how to develop better treatments, we conduct five types of study.

  • We analyse the molecular information contained in blood or tissue samples.  By studying the make-up and changes in cells affected by diseases we contribute to developing future treatments.
  • We monitor participants’ health through clinical examinations, questionnaires and by examining blood and tissue samples.  This helps us learn more about specific diseases and their symptoms.
  • We compare responses to different medications and treatments across groups of patients to see which are most effective.
  • We observe how well a particular medication is working and monitor any possible side effects – again across groups of patients.  The more participants we can monitor, the better our findings.
  • We test new medical devices, which provide information about participants or treat their conditions.

Where you Come In

Modern research is truly a team effort. Scientists, nurses, doctors and many others work tirelessly to improve patient health through research, but translational research can only take place with the voluntary participation of suitable patients.

If you have been asked to take part in a clinical research study, or if you have been asked to give permission for a family member who is unable to make this decision for themselves, we invite you to read through the information throughout this site. Please do contact us, should you have any questions.

Taking Part in a Research Study

There are several steps involved in taking part in a study. The process is explained below:

Step 1: Request for participation

Staff at the centre review patient’s charts to identify individuals who might be suitable to take part in a particular study. If we find that you would be a good candidate, we will first ask you in person to take part. As this request comes at a time when you may not be feeling your best, and may be concerned about your health or that of a loved one, please keep in mind that this is just the first step – everything will be explained in great detail, and you can take as much time as you like to consider your response. It is very important to us that those who choose to take part feel entirely comfortable

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 in order to make up your mind. To this end, we will provide you with two forms: a patient information sheet and a consent form. The patient information sheet will explain the study in detail, setting out:    

  • the purpose of the study
  • the length of time it will take
  • the procedures involved
  • the possible benefits of the medication or device in question
  • the possible risks involved

If you then feel happy to participate, we will ask you to sign a consent form, and the study will begin. A doctor or nurse involved in the study   will be available to respond to any questions or concerns you might have at any time.

Step 3: Participation

Taking part in a clinical study typically involves visiting our centre at specified times. Depending on the type of study, these visits may include:

  • having a medical examination
  • completing a questionnaire
  • giving a blood sample
  • taking medication

Alternatively, if you are attending the Hospital for surgery, we may ask you to donate a tissue sample. As part of your surgery some tissue may be removed, and normally this tissue is disposed of after your operation. In cases such as this, we would ask you to donate some of this discarded tissue to the research team in a specific study. This does not affect your surgery in any way - all that happens is that tissue which would normally be discarded is analysed in the research laboratory.

Why take part?

There are many advantages to taking part in a clinical study. You will be monitored very closely throughout, and have access to a team of experts at all times. However there are much wider benefits. The role of the patient in the trial is absolutely central, and through your participation, we hope to increase our understanding of many of the world’s most serious illnesses. We cannot stress just how valuable this contribution is - without the voluntary involvement of the participants, there would be no research programme.

By participating in a study, you are joining a team whose goal is to generate new medical knowledge, with the ultimate aim of finding new and better ways to treat or even cure serious diseases. We firmly believe that in making the decision to take part, each patient is making a real and valuable contribution to improving the health care of our own and future generations.

How the Information is Used

The information gathered from the studies will be used in the Translational Research programme. Depending on the study, this may mean that: your blood or tissue sample will be analysed and compared with specimens from unaffected volunteers, allowing us to identify the genes involved in a particular disease process.

If you are involved in a questionnaire based study we will analyse the information provided to try and identify factors that cause disease, or influence how it progresses. If you are involved in a study looking at how effective a new medication or medical device is we will compare your information to that of other patients to determine how effective the new treatment really is. Regardless of the study we will keep you closely informed about all aspects of your participation.

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 evaluate 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 involved 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 participate in a research study you will be assigned a unique study number. The information collected in the course of the study will be stored in a computer database, but your information will be identified by the study number and never by name, thus safeguarding your confidentiality. The results of the study may be published in medical literature and scientific journals, or presented at national or international conferences, but again, participants’ names will never be revealed.