Ever consider participating in clinical research?

Q: My friend in Los Angeles has been approached about being part of a clinical trial for Alzheimer's. Why would their doctor suggest they participate, and how do they work?

A: With nearly 67,000 worldwide studies looking for participants, if one has never considered being part of clinical observations or trials, there are several ways to be included in research that helps others.

What is clinical research?

There are two main types of research that study health and illness: observational studies and clinical trials. Observational studies gather information and compare changes over a designated period of time. Clinical trials follow a person's illness to learn what medical devices, surgical procedures, or behavioral interventions can aid recovery, or test treatment efficacy, find new approaches to health problems, or discover ways to diagnose early-even before there are symptoms.

Why participation is important

If someone participates in a clinical trial, they may receive medical care or new cutting-edge treatments not currently available to the general public. They may also learn more about their disease, receive educational materials, or connect with support groups. Participating in a clinical trial may also provide individuals with access to personalized treatment plans and close monitoring by healthcare professionals. This can lead to better management of their condition and improved health outcomes.

Moreover, some clinical trials offer financial compensation to participants for their time and travel expenses. While financial incentives should not be the primary reason for participating in a clinical trial, they can provide some additional support for individuals who choose to participate.

In the case of your friend, they would aid researchers in potentially diagnosing, treating and preventing Alzheimer's disease or related dementias such as Lewy body dementia, vascular dementia, or frontotemporal dementia. Ultimately, this provides others with better treatments and prevention strategies in the future.

Who can participate in an Alzheimer's or related dementia clinical trial?

Anyone 18 or older can participate-not only those with dementia or memory problems, but also healthy volunteers, caregivers and family members.

Researchers are looking for a variety of partners:

- Alzheimer's and related dementia patients, those with cognitive impairment, and people afflicted with diminishing brain health

- People who are healthy, without symptoms of dementia

- Both younger and older people

- People who are at-risk given their family history, genetic makeup, or biomarkers, which are measures that could signal very early stages of disease

- People with Down syndrome, who are at higher risk for Alzheimer's disease

- Caregivers of people with dementia

How to participate

There are many fields looking for participants aside from Alzheimer's disease. Go to http://www.ClinicalTrials.gov

Why is diversity needed in clinical trials?

Researchers need participants who represent all types of races and ethnicities, genders, ages, geographic locations and sexual orientations.

Representativeness. Including a diverse range of participants in clinical trials ensures that the results are applicable to a wider population. Different demographic groups may respond differently to treatments, so having diverse participants can help ensure that the results are generalizable.

Equity. Ensuring diversity in clinical trials helps to address disparities in health outcomes among different populations. By including participants from marginalized or underrepresented groups, such as Asian, Black/African American, Hispanic/Latino, Native American, and/or Pacific Islander, researchers can better understand how treatments may affect these populations and work toward more equitable healthcare.

Safety. Some treatments may have different effects on different demographic groups, such as differences in drug metabolism or side effects. Including a diverse range of participants in clinical trials helps to identify any potential safety concerns that may be specific to certain populations.

Trust and access. Lack of diversity in clinical trials can contribute to mistrust in the healthcare system among marginalized communities. By actively including diverse participants in clinical trials, researchers can build trust with community members and ensure that everyone has equal access to advanced treatments.

Diversity in clinical trials is essential for ensuring that research findings are valid, applicable, and equitable for all populations.

Making the decision

Overall, participation in clinical research can be a valuable experience for individuals who are looking to access new treatments, contribute to medical solutions, and potentially improve their own health outcomes. However, it is important for individuals to carefully consider the risks and benefits of participating in clinical research and to discuss their decision with healthcare professionals.

Karen Casanovas, PCC, CPCC, CLIPP is a health and wellness professional coach practicing in Anchorage. Write to her at info@karencasanovas.com.

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