Enrolling in an LBD research study requires some time and effort, but the benefits can be considerable – particularly for those who have been diagnosed with Lewy body dementia. If you are considering participation in an LBD study, here are some key advantages of your involvement:
You are in complete control
Medical professionals involved in clinical research – that is, a study involving people – have a duty to protect the rights, safety, and welfare of the study volunteers. Study participants have the right to withdraw from a study at any time and for any reason. As a study volunteer, your continued participation is always up to you.
You could be compensated
Every clinical research study is unique, but certain LBD studies pay volunteers to participate. In such cases, study participants and care partners could be paid for their time and travel expenses.
Get access to new treatments
Currently, there are no FDA-approved treatments for any symptoms of dementia with Lewy bodies (DLB). This is why finding new LBD treatments is the number one priority for LBD clinical research. Depending on the purpose of the study, you may receive access to experimental treatments.
Take an active role in your healthcare
Being a part of a clinical trial could provide you with more regularly monitored visits and routine clinical services, which could result in a better standard of care. By simply participating in a clinical trial, you take a more active role in your healthcare. You may gain a greater understanding of the disease or a greater sense of purpose, as taking responsibility for your health can be empowering.
During an LBD clinical trial, you will have access to highly trained physicians and research staff who are extremely familiar with LBD. Depending on the trial, you may also receive a range of diagnostic tests, medical exams, and lab work. Such tests offer an effective way to check up on your health. They may even uncover other health issues which would benefit from treatment, such as high blood pressure, Type II diabetes, or other common conditions.
Advance medical science for future generations
We currently know very little about LBD, which makes LBD research so essential. Clinical studies, like those conducted at the LBDA’s Research Centers of Excellence (RCOE), are focused on advancing our understanding of LBD in several ways.
Some researchers are trying to identify differences in the brain between LBD, Alzheimer’s disease, and Parkinson’s disease. Other researchers are trying to uncover genetic and environmental risk factors that could contribute to LBD. Still others are trying to identify LBD “biomarkers” – measurable biological changes in the body – that can indicate the presence of LBD, or can be used to indirectly measure whether someone might respond to a new treatment or not.
By participating in an LBD research study, you will be helping medical science move forward to solve such LBD mysteries. You will be helping researchers find more effective LBD treatments and possibly even ways to cure or prevent the disorder. Ultimately, you will be contributing to a healthier society for future generations – possibly even your own children and grandchildren.
Fight LBD by finding a purpose that helps others
At the LBDA, we have seen how people living with LBD enjoy an empowered outlook on life, in finding a new purpose that helps others. Enrolling in any LBD study certainly qualifies! It is the sort of generous act that would help others and could ultimately help yourself.