Leaving a Research Study Can Be Hard, but Still Helpful

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by Lori DePorter |

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Research studies and clinical trials are crucial for the development of new treatment options for Parkinson’s disease, as well as finding a cure. Enrolling in them is a commitment by both the investigators and the participants.

If you are considering applying for a clinical trial or research study, the research team will explain your rights as a research subject. It is essential to understand them before agreeing to participate. Ask questions and make an informed decision.

Unfortunately, an informed decision can still be wrong. Participants sometimes leave a trial or study, resulting in what is known as attrition, or the “loss of study units from a sample,” according to the Institute of Education Sciences. In August 2020, I shared my experience in a study of the Personal KinetiGraph (PKG) watch before I struggled with thoughts of withdrawing.

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The PKG watch and its benefits for people with Parkinson’s disease were evident in the information I received with each evaluation. The watch provided data on my symptoms, allowing my doctor to utilize medications to more efficiently manage my off periods, when symptoms worsen.

I felt great and was meeting the benchmarks identified on the reports and graphs we discussed. It was beneficial to my bradykinesia, the motor symptom that bothers me the most because I’m not particularly eager to slow down.

However, something wasn’t right. I was feeling uncertain but couldn’t figure out why. I decided to go to the person who knows me best, my husband, Mike.

“Why am I acting like this?” I asked. “You are too focused on the numbers,” he replied.

That was it! I am an engineer, and we like statistics and numbers. However, these numbers were not good for me. After my diagnosis, my treatment plan focused on staying healthy. I used daily exercise, together with medications, to manage my symptoms. Now, my focus was on the benchmarks and the numbers.

I knew I needed to leave the PKG study, but I was terrified to tell the lead researcher. I tried the easy way out by leaving a voicemail that briefly explained my thoughts. A few minutes later, he returned my phone call.

Although I was not required to do so, I shared my reasons for withdrawing from the study. I explained that the PKG watch was a valuable tool for doctors and provided information that a patient may be unable to convey. However, it also offered me information — too much information. It was not a good fit for me.

I apologized for the research losing future data due to my decision. He explained that sharing my thoughts was also valuable. I had provided information to determine who would benefit from the watch, which also was important.

The PKG watch will be an excellent tool for the future of Parkinson’s disease management, especially for bradykinesia. I am grateful I contributed to its development, even in a way I hadn’t expected.


Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

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