Alzheimer’s researchers have made significant progress in recent years. We now know more about how the disease develops, how genetics play a factor and possibly even how to prevent it.
Unfortunately, the lack of participants in clinical trials has caused a delay in 80 percent of studies. Volunteers are needed, but participation might not be right for everyone. It’s important to discuss the benefits and risks and decide the best option for you and your family.
What are clinical trials?
Clinical trials are studies used to test if certain treatments and therapies are safe to use on humans, and how effective they are. These studies can involve tests, drugs or therapies, which can be used to research ways to prevent, diagnose, treat or cure diseases.
Who can participate?
Each study has its own qualifications for enrollment. In general, people with Alzheimer’s are the target demographic. Some studies may have more specific requirements based on age, stage of the disease and family history.
Many people don’t realize that you don’t have to be diagnosed with Alzheimer’s to participate in a trial. There is research surrounding prevention and family history that can benefit from incorporating healthy subjects.
There are also studies that look for information from family members and caregivers. Some of these may be as simple as an online questionnaire.
How much do they cost?
The cost typically depends on the trial. An online questionnaire may be quick and cost-free, while studies requiring travel may be expensive.
Some trials may reimburse you for related costs or even provide additional compensation. Make sure to discuss this with the provider before starting a trial.
Are they dangerous?
Patients may be hesitant to participate in clinical trials because of the risks involved. This is a legitimate concern.
Because clinical trials are largely experiments, there is no way for researchers to promise a specific outcome. Most trials will come with some level of risk, whether it’s life-threatening, or simply discomfort. Any risks or side effects should be discussed before signing up for a trial.
A common myth about clinical trials is that the doctors involved do not provide the same quality of care as a person’s regular doctor might.
The good news is that these experiments are strictly regulated by the federal government, and all legal and ethical codes that apply to medical practice also apply to clinical trials.
In fact, clinical trials might actually offer a better quality of care. Studies have reported that some participants involved in experiments were doing better than their counterparts who did not participate.
What are the benefits?
While clinical trials can be a risk, there also are benefits to participating.
- You will be carefully monitored. Researchers need to check on participants regularly. Depending on the type of study, you may be visiting both your regular doctor and a research facility. If that’s the case, you likely have more professionals taking care of you than other patients.
- You could learn more about Alzheimer’s, resources and support groups. Certain studies may offer support groups or resources exclusive to participants. Either way, you are likely to have the most up-to-date information about the disease.
- You have a chance of success. There isn’t a cure for Alzheimer’s, so an experimental treatment could end up being more effective than anything else currently available. Who knows, maybe you’re lucky enough to test the future cure!
- You can help others. Regardless of whether your experimental treatment works, researchers will learn something from your participation. That could help save lives down the line.
- You can help your family. Alzheimer’s is linked to genetic mutations, meaning family members could be at risk. Participation in clinical trials could help developments in prevention research before a family member is diagnosed, or treatments in the event of a diagnosis.
How do I sign up?
You can look for clinical trials online and in newspapers. Your doctor’s office may also know about local trials.
If you can’t find the right trial for you, try signing up for a free online registry like the Alzheimer’s Association’s TrialMatch.
There are plenty of free registries, so there’s no need to pay for one. If a website requires payment information, it might be a scam.
Registries search through hundreds of studies to find trials that could be right for you. Joining a registry does not make you obligated to participate in a study.
Before signing up for a clinical trial, make sure you understand all requirements, costs, and risks associated with the trial. For help, check out the National Institute on Aging’s list of questions to ask the provider.
*This content is not medical advice, nor is it a substitute for professional medical advice, diagnosis, or treatment.
Christian Worstell is a freelance writer living in Raleigh, NC. He enjoys blogging about health and lifestyle topics and is a regular contributor to several blogs and media outlets. You can find more of his writing here.