"They're working on it." A common thought we have when we think of the dedicated community of scientists and clinicians involved in medical research. But what we must realize is that we as patients and also those without illness, are crucial to this process.
For a new neurologic treatment to get from the lab counter to the pharmacy shelf it can take decades and well over a billion dollars. Approximately half of that time is spent in clinical trials. Yet close to 85% of all neurologic clinical trials are delayed due to recruitment difficulties and a shocking 30% fail to recruit a single subject. In the field of cancer research in the U.S., less than 5% of adults with cancer enrol in clinical trials.
The statistics may differ from disease to disease, but the challenges with clinical trial participation are seen across the spectrum of medical research. Any delay a study faces due to difficulty in finding participants, leads to a huge waste of resources, money and most importantly time. Without enough volunteers to participate in medical research the development of better treatments and ultimately a cure for the myriad of diseases that impact us all, will not be possible.
There are a number of issues that make enrolling in a clinical study that much more difficult, many of which are logistical. Accessibility may also be an issue as is not meeting the study criteria. But more significantly is that there is often a lack of knowledge and a number of myths and misconceptions about clinical trials that may influence a potential participant's decision. Here is a list of ten common concerns.
Clinical trials always involve taking new medications.
Not all clinical trials involve testing a new treatment. Some do of course but many are observational where scientists learn about particular disease states by monitoring a group of affected patients. Others may be testing an already approved and safe medication that is normally used for other health issues (known as repurposing an existing drug). There are a wide variety of options to become involved depending on what makes the most sense for you.
I don't really want to be the "test" subject for a brand new, unproven medication that they know nothing about. It's dangerous and too risky.
The drug development process is heavily regulated and monitored by a country's health authority. The largest numbers of participants are needed for phase 3 trials, which is further along the drug development pipeline. By this time the intervention or treatment has already passed safety studies and has been shown to be effective. Of course regardless of the stage of development, any treatment or clinical research has a certain degree of risk and it is important that you be comfortable with that possibility.
If I participate in a clinical trial, then I may get worse.
The premise of new interventions being tested is that they will result in benefit but of course you cannot be completely sure of the outcome. You may be given a treatment that is not as effective as the standard treatment or results in unexpected side effects. Likewise you may receive a new treatment that is better for your condition. It is your right as a clinical trial participant to withdraw from the study if you feel that your condition is worsening.
If I participate in a clinical trial then I won't receive the same quality of care that I currently have with my doctor.
In most situations, you continue to receive ongoing care from your own physician, and they are aware of your involvement in a particular study. Also for the most part, those enrolled in a research study often undergo closer monitoring and evaluation than usual.
Participating in a clinical trial is bound to disrupt my daily life and is a huge time commitment.
There is so much variation in the logistics of different clinical studies. Some require more intensive follow up while others may be completed in a single visit. Some may even be done at home online or may simply involve sending in a DNA sample by mail.
There may be painful procedures as part of the clinical trial.
The vast majority of clinical trials are not invasive or painful. You will be informed of all potential procedures ahead of time which allows you to make a decision that is appropriate for you. But keep in mind that it is not the researchers' intention to cause any discomfort and much thought is put into minimizing any adverse effects.
If I join a clinical study, I won't be able to drop out without jeopardizing my treatment.
There are many reasons both personal, logistical or specific to the research study itself that may result in a participant withdrawing. It is completely within your rights as a patient to do so at any time without fearing that your care will be jeopardized in any way.
I can only participate in a trial if I have access to a major medical institution.
Many studies take part in the community setting by physicians close to home. Some can even be done online.
If it was a good idea for me to participate in a clinical trial, my doctor would have told me about it.
Despite the fact that a patient poll revealed that 77% of those that responded would like to participate in clinical trials only about 22% say that their physician ever mentioned medical research. There are so many issues that have to be dealt with during the short span of your medical appointment, that there often is not enough time to educate you about the clinical trials that are available or suitable. Therefore just because a trial is not mentioned, does not mean it is not a viable option. Instead you must rely on other resources (many available online) to inform yourself of appropriate opportunities.
You should only participate in a clinical study if you have no other treatment options available to you.
There are clinical studies directed at many different stages of disease. Those directed at controlling late stage symptoms may require subjects farther along in their condition. However there are many studies (particularly those testing potentially disease-modifying treatments) that aim to include relatively newly diagnosed individuals, particularly those that may have not started medications.
Participating in a clinical trial is not something to take lightly. It is a commitment of time and self and you must be fully informed of all potential benefits and risks in order to make the right decision. During this Clinical Trials Awareness Week and beyond, it is important to support medical research through funding, educating others or considering participating in a clinical trial because without these studies, there can be no better treatments or cures.
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