Getting involved

In this section you find information if you want to get involved in Clinical Trials.
Questions you might have when thinking of entering a clinical trial, such as what different types of clinical trials exist, where you can find out about ongoing clinical trials, what are the risks and benefits and many more are answered in this section.

1. What are the different types of clinical trials that I can participate in?
2. How can I find out which clinical trials are going on?
3. How can I volunteer and participate in a clinical trial?
4. Can I contact a company directly to volunteer in a clinical trial?
5. Why should I participate in a clinical trial?
6. What questions should I ask before volunteering?
7. What will happen to me during a clinical trial?
8. My physician won’t put my name forward. What should I do?
9. Will taking part in a clinical trial affect the care I receive from my doctors?
10. Will I have to stop taking my current medication? What are the risks and benefits of participating in a clinical trial?
11. Is there someone I can ask if I have questions or problems that arise while I am in the trial?
12. If the treatment works, will I be able to carry on getting it after the trial has ended?

1. What are the different types of clinical trials that I can participate in?

Interventional trials (also called treatment trials) determine whether new treatments, new combination of drugs, new ways of using known therapies or new approaches to surgery or radiation therapy are safe and effective. These trials might ask a participant to take an experimental new drug or undergo surgery.

Prevention trials look for better ways to prevent disease in people who have never had the disease or to prevent a disease from returning. These approaches may include medicines, vitamins, vaccines, minerals, or lifestyle changes.

Observational trials address health issues in large groups of people. Trial participants may be asked to answer questions about their family histories or give blood samples, but they do not receive treatment for their diseases.

Screening trials test the best way to detect certain diseases or health conditions.

Quality of Life trials (or Supportive Care trials) explore ways to improve comfort and the quality of life for individuals with a chronic illness.

Diagnostic trials refer to trials that are conducted to find better tests or procedures for diagnosing a particular disease or condition. Diagnostic trials usually include people who have signs or symptoms of the disease or condition being studied.

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2. How can I find out which clinical trials are going on?

Unfortunately, at the moment there is no easy way to find a clinical trial that may be suitable for you. The best thing to do is to discuss it with your own doctor to see if you can be referred.

The International Federation of Pharmaceutical Manufacturers & Associations (IFPMA) has launched a user-friendly search portal allowing people seeking clinical trial information to search for comprehensive information on ongoing clinical trials or conducted by the pharmaceutical industry.
This portal enhances transparency and access to clinical trial information for patients and physicians through an easy-to-use online trial search engine. Information can be located by entering a disease and/or product name in the search fields.

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3. How can I volunteer and participate in a clinical trial?

If you are interested in this, you should talk about it with your family doctor in order to understand the personal implications of participating in a clinical trial. Your doctor will contact the sponsoring company and put you forward.

In general, companies have a close investigator relationship to a group of selected and accredited physicians who will conduct the study. In cooperation with your family doctor they will examine your case and decide about your participation. As the selection process and evaluation of eligibility criteria must be done under strict medical considerations that only a physician is able to fully appreciate, not the patient but his physician has to submit the application.

There are a number of online resources that can also assist in locating clinical trials that are accepting patients:
- ClinicalTrials.gov
- Cancer.gov
- CenterWatch

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4. Can I contact a company directly to volunteer in a clinical trial?

No, this has to be done by your doctor. In general it is only possible to contact the company for information on contact persons on the specific ongoing clinical trials. They will indicate the responsible physicians of the study who decide about the participation.

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5. Why should I participate in a clinical trial?

There are various reasons for considering participation in a trial, such as suffering from a disease or scientific or personal interest. At any rate, you should discuss this with trusted people among your family and friends as well as with your physician(s). Please read also Question 10, which is related to this topic.

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6. What questions should I ask before volunteering?

You might find it helpful to ask questions about a clinical trial before deciding whether to take part. You can ask your doctor or nurse, or the investigators running the trial. Remember that you should ask questions until you are comfortable with the information provided. Some helpful questions might include:

What’s the point of the trial? How will it help people?
What’s known already from previous research?
Who reviewed and approved the trial?
Who is taking part in it? Why do you want me to take part?
How will this be different to the care I’m getting now and what are my options for treatment?
If the trial is testing a drug, how often must I take it, when and for how long?
Do you know anything about the potential side effects, risks or benefits?
How will the trial affect my daily life?
How often will I have to visit the clinic?
How far will I have to travel and will I have to make all the arrangements?
Will you give me food or drink if I’ve travelled a long way?
What will happen at these visits? Will I have extra tests?
What other medication can I take when I’m taking part in this trial?
Will I get regular check-ups? What happens if my condition gets worse?
What happens if something goes wrong?
How long will the trial last?
Who is running the trial?
Will I be told about the progress of the trial as we go along?
Will I be told about the results of the trial when it ends?
Who is funding the trial?
Will my expenses be paid e.g. for travel or childcare costs?
Is there anything I’m not allowed to do while I’m taking part in the trial?
Who will tell my GP that I’m on a trial?
How will my personal information be kept confidential?
Can I talk to other people taking part?
Who can I talk to if I have any more questions? (There should be someone available throughout the trial who can answer any further questions you may have)
What will happen if I do well on the trial treatment, and the trial has ended? Can I then continue?

click here to download a printable PDF with these questions

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7. What will happen to me during a clinical trial?

If you agree to join a trial, you may have more medical tests before you are given any treatment. This will allow the investigators to know where you started, so they can tell at the end of the trial whether there has been any improvement. These are called baseline measures.

During the trial you may have more tests to see whether the treatment is working. These are known as outcome measures. This may involve more visits to the clinic than normal, or more tests than normal - for example, extra blood might be taken when you give a blood sample. Sometimes the tests are carried out as part of your routine care.

You may have to make some changes to your everyday life. This may include avoiding certain foods or over-the-counter medications like anti-histamines. You may also be asked to keep a diary. This could contain notes about how you are feeling after your treatment, whether you get a particular side effect, and how long it lasts.

As well as measuring the physical effects of a treatment, many trials now try to assess the impact on people’s quality of life. For example, a ‘quality of life’ study might ask you about:

Your mood and general sense of well-being
Whether you feel more tired than usual
Whether you are managing to lead the life you would lead normally – going to work, looking after your family, or whatever you would normally do.

You and your doctor might decide that you should stop taking part in a trial if your condition is getting worse and the treatment is not helping you. You can choose to leave at any point in a trial without giving a reason and without it affecting the level of care you receive.

Do not be concerned if you want to leave a trial because you are experiencing side-effects. The information will still be useful to others. The investigators may want to continue to follow your progress after the trial, even if you left early. This helps them to interpret the results of the trial accurately.

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8. My physician won’t put my name forward. What should I do?

Usually all search portals (e.g. IFPMA) indicate information about the responsible contact persons. On request they give specific information and advice on the particular study and make the best possible effort to put you in contact with the physicians who will conduct the study. Volunteers, whose family doctor doesn’t provide support, should contact these physicians. If necessary, they will contact the family doctor for further information about the patient’s medical history.

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9. Will taking part in a clinical trial affect the care I receive from my doctors?

No. You will be asked to come for regular check-ups and tests. Your doctors will have put your name forward and will therefore know that you are taking part in a clinical trial. This too will give you more opportunities to chat with them if you have any questions.

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10. Will I have to stop taking my current medication? What are the risks and benefits of participating in a clinical trial?

You will usually be invited to take part in a clinical trial because you are a patient who needs treatment. You will then have a choice between joining a trial or carrying on with the treatment you would have been given anyway. This is not an easy decision. You will have to weigh up all the pros and cons of either option. It is important to consider what’s most important to you and which option is most likely to give you the most benefits.

There are clearly many things to think about before taking part in a clinical trial. Some of the benefits and risks of taking part are listed below.

Possible benefits of taking part in a clinical trial

You may receive a new treatment before it is widely available
You may help to produce information of use to yourself and others with the same health problem
You can play a more active role in your own healthcare
Your treatment and progress may be monitored more closely

Possible risks of taking part in a clinical trial

You may experience unexpected side-effects
You may have to visit the clinic or hospital more often because you are being monitored more closely
You may have to undergo more tests (for example blood tests) then you would usually have in routine care
You may be given a new treatment that is less effective than the standard treatment. Or
you may be given the standard treatment when the new treatment proves to be more effective.
You may find the new treatment works well for some other people, but not for you
You may not have access to the new treatment at the end of the trial, even if proves to be
the best one.

11. Is there someone I can ask if I have questions or problems that arise while I am in the trial?

If you have any questions or problems you should always ask the trial investigator first. They will be able to help you.

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12. If the treatment works, will I be able to carry on getting it after the trial has ended?

It should be remembered that in most trials the different treatments are allocated randomly to the patients who enrol and neither you nor your doctor can choose which one you receive.

Furthermore, most trials are also conducted ‘blind’ and neither you nor your doctor will know which of the treatments you are receiving until the end of the trial. If, at the end of the trial one treatment is found to be better than another, the opportunity to move onto the better treatment may be discussed with you, if it was not the treatment that you were receiving during the trial.

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