Clinical research is the heart of all medical advances by looking at new ways to prevent, detect, or treat disease. The goal of clinical research is to help doctors and researchers learn more about disease and improve health care for people in the future. Here at the Penn FTD Center, we are involved in different types of clinical research: observational and clinical trials. The main difference between observational studies and clinical trials is if the researchers assign participants to get an intervention (such as a drug, behavior, or medical device). In observational studies, an intervention is not assigned, and the researchers simply observe and collect data on participants. In a clinical trial, participants are assigned to receive a specific intervention, such as a new drug or treatment, to test efficacy and safety.
Observational research and clinical trials work together by providing complementary information to better highlight outcomes and results. Observational studies can identify potential associations or trends that can then be investigated further in a more controlled setting with a clinical trial. The results from a clinical trial can identify gaps in knowledge that can be investigated over time in observational research. Clinical research is critically important for developing treatment for conditions like FTD. The Penn FTD Center is home to various observational research that has helped lead to multiple clinical trials that are currently underway. If you choose to participate in observational research or a clinical trial at the Penn FTD Center, you can expect to undergo cognitive testing, an MRI, blood draw, and a lumbar puncture. For details on the specifics of each study we offer, please visit our website at https://www.pennftdcenter.org/observational research or https://www.pennftdcenter.org/clinical-trials for more information.
For participants with FTD or related conditions to be involved in research, having a reliable and consistent study partner is crucial. An ideal study partner is knowledgeable informant who has frequent contact with the study participant. The study partner provides valuable insight into how patients are doing outside of the clinic, which can help with researchers understanding of how the disease may be progressing. As a study partner, you may be tasked with completing questionnaires or interviews with the study team. While being a study partner can require a commitment of both time and effort, it is also a rewarding and valuable way to help your loved one and the larger FTD community.
Participating in research is a way to help improve diagnosis and treatment of FTD and all related neurogenerative conditions. Researchers can learn a great deal about FTD through clinical research. This work contributes to improving diagnosis, developing new markers of prognosis, and discovering therapeutic targets that can enhance and further the development of clinical trials. Whether you choose to participate in clinical research for yourself or for others, your contribution has an enormous impact on advancing the science of FTD and related conditions. If you are interested in learning more about participating in research at the Penn FTD Center, please reach out at PennFTDC@pennmedicine.upenn.edu or 215-349-5863.
~ Quinn Hlava, Clinical Trials Coordinator