For some conditions, there is a go-to treatment. For others, there might be no available treatment, or existing treatments, such as chemotherapy, may produce intense side effects that result in further issues.
If you are a patient suffering from a disease for which there is no defined treatment on offer, then one of your options is to enroll in a clinical trial. Enrolling in a trial can benefit you and other future patients as you will contribute to research into your condition to help medical professionals develop the right treatment.
Alternatively, even if you do not have a medical condition, you could participate in clinical trials that recruit healthy people, such as trials for vaccines or those that need healthy control volunteers to help establish baselines.
Clinical trials help with the development of new treatments for diseases or conditions. This could be in cases where there are currently no treatments available, or it could be to develop more effective treatments with fewer side effects.
There are numerous benefits for individuals who enroll in clinical trials, including more frequent health care check-ups (almost always free of charge), access to and monitoring by leading specialists, and, often, gaining a better understanding of your condition, which helps you to treat or manage it.
By participating in a clinical trial, 85% of trial participants¹ have felt they received better treatment than they otherwise would have.
If you are interested in enrolling in a clinical trial, keep in mind that not all trials are successful. Clinical trials can fail if the drug or device being trialed does not demonstrate efficacy. 57% of drugs² fail for this reason.
A common reason why a potentially effective treatment can fail during the trial stage is simply due to the trial sample size being too small. For this reason, it is incredibly important to recruit more volunteers to participate in clinical trials because a larger sample size ensures that treatment is adequately tested and generates better data about its effectiveness.
While there is always a risk that the drug or device being trialed does not result in the desired outcome, the potential benefits of enrolling in a clinical trial can still be useful for both you and the medical researchers, and you are making an important contribution to finding a treatment that does work.
Finally, another incentive to enroll in a clinical trial is that many offer a stipend to participants, varying from hundreds to thousands of dollars. Paid clinical trial opportunities are often available to healthy volunteers but can also be available to people seeking treatment for their condition. A trial can therefore help you offset the loss of income you might experience due to your illness.
The biggest obstacle for most patients in accessing clinical trials is simply finding out what trials are on offer. Additionally, not all trials are conveniently located, as you may have to travel. Some trials may have the funding to pay for your travel costs if you live far away, while others may not, so it is important to check the details of each trial.
There are a number of ways patients and volunteers can locate clinical trials in their local area.
An easy option is to sign up for a free online service that helps to match you with an appropriate clinical trial. As most clinical trial protocols are not written with patients in mind but instead are aimed at doctors, it can sometimes be hard to understand the jargon about what the trial involves and who is eligible. A free online service can simplify the process and save a lot of time for prospective trial participants.
Your first port of call is typically to ask your doctor or another healthcare provider about whether they recommend you participate in any clinical trials, and if so, which ones. In any case, make sure to keep your doctor, such as your GP, in the loop. Your doctor can refer you to a clinical trial that you otherwise may not have access to.
Nurses are also an excellent source of knowledge, and many oncology nurses³ consider informing patients about trials to be part of their job.
It is a good idea to approach your doctor and other providers and let them know if you are interested in participating in clinical trials. Bear in mind that your doctor can’t know about every available trial. They may also not be able to refer you to the perfect trial, so you should not assume that a trial recommended by your doctor is automatically the right one. It is important to do your own research as well.
It is recommended that you have direct communication with the research team yourself when you are looking into a trial instead of just having your doctor handle all communication. It is important that you advocate for yourself with the trial team. However, it is good to start with your doctor in your search for a clinical trial as they can help you figure out whether it is worth looking into a specific study.
Clinical trials can be sponsored by various organizations, including drug manufacturers, governments, universities with teaching hospitals, or large hospital systems.
It's worth checking the trial organization’s website, which should have a list of the trials they are currently facilitating. Alternatively, you can call them and ask. The chances that they happen to have a relevant trial are relatively low, but it is often worth checking.
Some pharmaceutical companies may also list trials on their websites and have an online tool that matches you to a suitable trial. If you live near the NIH or another government organization, check their trial listings as well.
There are a number of public online databases of clinical trials. These databases allow you to search by a medical condition, treatment, other keywords, or a specific location to find trials best suited to your situation.
However, it can be tedious and time-consuming to search through tens of thousands of trials on these databases, and if you don't know which keywords to use, you might miss something useful. There is also a risk that you could end up applying for a trial you are not eligible for. Reviewing eligibility requirements with a healthcare provider can help avoid this, but it can be difficult to narrow down the list of potential trials yourself.
Another option to match you with an appropriate clinical trial is to talk to support or advocacy groups for your condition. You could join Facebook groups for people with your condition or their family members, as it is possible that a member of the group is enrolled in, or knows of, a trial that might be suitable for you.
Generally, the larger the group, the higher your chance of finding out about a trial. As finding relevant clinical trials in your local area can be challenging, you may have a better chance of doing so if you join a local group.
If you have been searching for trials using the options above and have found some you are interested in, what should you do next?
Here are some steps to make sure that the trial you are looking at is a good fit for you:
Identify the sponsor.
Contact the trial administrator or principal investigator. Have a list of questions prepared to ask them about the trial. Clinical trials have complex written protocols, so going over them with a research team member can ensure you are eligible and improve your understanding of what the trial involves.
Talk to your doctor about the trial. Bring along a copy of the protocols and any other information so they can help you to make an informed decision about whether to enroll. Your doctor may spot something that means the trial is not a good match for you before you get too far into the process. If you are looking into several trials, your doctor can help you select the best one. It is important to make a special appointment with your doctor to do this, whether in person or via a video call.
Get a second opinion if you can. Talking to another doctor not connected to the trial can give you a broader picture of whether the trial is right for you.
Do your research into the type of clinical trial and whether the proposed treatment has been studied before or if it is being studied for other diseases.
Talk to friends and family members as they may offer insights you had not thought about.
Once you have decided to apply to a trial, contact the trial administrators again and seek guidance on the application process. Your doctor may also be able to help or may know someone who can assist with the paperwork.
Make sure that you are comfortable with the trial protocols and the amount of time and effort you will have to dedicate to it.
While it is always recommended that you ask your doctor, you can find a clinical trial through your own research. Online services can help match you with trials that may be right for you, and they let you take control over your condition and treatment.
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