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What to Expect if you Enroll in a Neurology Clinical Trial

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Medically reviewed by Jay Rubin, M.D.

As a patient living with a neurological condition, it can be frustrating when you've unsuccessfully tried treatments that do not help your symptoms or cause you severe side effects. By now, you may have heard of clinical trials as an alternative care option. Your doctor may even have suggested this option and offered to refer you to a trial. Here are some things to expect when you enroll in a neurology clinical trial.

Rewards and Risks

By participating in a neurology clinical trial, you gain access to alternative treatments that are not yet publicly available. Your participation also helps advance medical science by providing researchers and doctors high-quality data that they can use to improve treatments. In many clinical research studies, patients receive excellent care from highly motivated clinical staff. In addition, the entire process of testing, treatment and monitoring is provided at no charge to the patient or to any insurance provider.

Risks of participating in a clinical trial may include side effects to the new treatment and the possibility that the treatment does not work at all. Sometimes, the new treatment is not better than the current options. It is important to understand that these are the possibilities involved in the process of developing new treatments. However, researchers try their best to implement safely and protect the wellbeing of clinical trial participants.

New! - Patient Guide to Participating in Clinical Trials

Evaluation

When participants enroll in a clinical trial, they are initially screened and evaluated using specific criteria such as age, gene types, MRI results, and, more recently, cognitive function. However, it is also important to realize that enrolling in a clinical trial does not mean automatic qualification and acceptance.  

You should prepare for the fact that you may not meet specific enrollment criteria, including medication complications, diagnosis, and certain other criteria.

Stability of Medications

In many trials, patients must have stable medications to be enrolled. A patient may not be enrolled if there have been multiple changes to medications before the study. For example, some neurological clinical trials require participants to have been on stable doses of medication for 30-120 days prior to starting the study.  

Permitted Medications

In some clinical trials, participants currently taking certain medications may not enroll in a trial as the medications may interact with the experimental treatments and interfere with the clinical trial outcomes. For example, blood thinners may be a reason patients are refused for some studies because they could prevent experimental treatments from working well or increase treatment risks.

Confirmation of Diagnosis 

Some trials require confirmation of diagnosis for the condition the trial is studying. These studies might require expensive testing by MRI, PET scans, or memory exams. Specialized testing procedures such as brain scans help clinical researchers identify and confirm any brain abnormalities. This helps researchers ensure that the treatment they provide in the clinical trial matches the condition diagnosed by the testing procedure.  

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Treatment

Having qualified and completed the initial process, many qualified patients move on to what is known as an open-label study, where all participants in the trial receive treatment. However, some studies proceed with a percentage of participants receiving the active drug while the rest receive a placebo.  

Randomization During Treatment

It is helpful to understand that researchers do not pick and choose who gets an active drug or a placebo—the process is randomized. Randomization prevents any bias and helps researchers to analyze results in a comparable and meaningful way. But this may mean you do not receive an experimental treatment that you wanted to try.

Treatment Timeframes

The length of a clinical trial can be short or long, depending on what is being tested. Some trials may last just a few months, while others last several years. Long-term clinical trials provide benefits such as identifying long-term outcomes and any uncommon side effects. These studies usually offer extended monitoring of patients and additional care options throughout the course of treatment. 
Patient Guide to Clinical Trials

 

Other Benefits of Clinical Trials

 

Free Testing

When you enroll in a clinical trial, you may be able to access free testing using state-of-the-art technology such as MRI, PET scans, and others. These tests are usually expensive outside of a clinical trial, but you can access free required testing by participating, even if you don't meet the eligibility criteria. 

By participating in clinical trials, you also get access to free treatment, which can be incredibly expensive once approved and placed on the market. For example, Biogen’s recently approved Alzheimer’s medication will cost each patient $56,000 annually. However, patients who participated in this study actually got it free of charge. Some studies also include an “extension” wherein the active treatment is eventually provided to all participants for longer periods of time.

Support for Caregivers

Caring for patients living with neurological conditions is a complex process, emotionally, physically, and psychologically. The research staff in clinical trials understand this and often are trained to provide caregivers with much-needed support.

Constant Monitoring  

When you enroll in a clinical trial, your medical information is constantly monitored to ensure safety and identify any potential issues. When warranted, this information is available to you and your physician. Ultimately, you have a right to patient confidentiality and can decide how your information is shared. 

Payment

Many patients worry about the time and financial constraints of participating in a clinical trial. However, some studies actually pay patients for their participation and even reimburse them for travel expenses. As a patient, this helps you focus on receiving great care without worrying about the financial burden involved in traveling to the clinical trial site.

Do you have questions for us?

SiteRx has a wealth of knowledge on how you can access clinical trials. Please reach out to our team to request more information. 

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