What is observational research?

The objective of observational research is to observe participants naturally, without any interventions or treatments. Observational research uses methods of questionnaires or interviews, collecting biospecimens (blood, saliva, cerebral spinal fluid, etc.), or cognitive testing when gathering natural data. This is different than interventional research (also called clinical trials), which involves intervening on a participant’s natural environment via a drug, a medical device, a lifestyle change, etc. In observational research studies, researchers observe the effects of a disease without any form of intervention. Observational research helps create a foundation for future research regarding treatment and advocacy.

The Penn FTD Center is involved in several observational research studies. Some of these studies are initiated by researchers at the University of Pennsylvania, such as the University of Pennsylvania Centralized Observational Research Repository on Neurodegenerative disease (UNICORN), which is designed to develop a better understanding of the causes and natural course of FTD and related neurodegenerative diseases by creating a very large collection of different types of data, that can be made available to researchers world-wide.  Another type of observational studies are consortium projects, such as the ARTFL-LEFFTDS Longitudinal Frontotemporal Lobar Degeneration (ALLFTD) study, The Dementia with Lewy Bodies Consortium (DLBC) study, or The Clinical Research in ALS and Related Disorders for Therapeutic Development (CReATe) study. Consortium studies are collaborative research projects that involve multiple institutions and scientists working together to create a large network of data from patients nationally and internationally. This type of diversity in patient population helps to strengthen the data and allows collaborators globally to work together to advance science. All these studies collect cerebral spinal fluid, blood samples, MRI imaging, cognitive testing, and other form-based questionnaires like demographics or family history over multiple visits (generally visits are done once or twice a year depending on the study). Collecting data from individuals over time is called longitudinal research. A lot of FTD and related diseases observational research is done longitudinal so researchers can observe disease progression over time.

Observational research has a meaningful impact on science.  In of the world of FTD research, observational studies help researchers and scientists understand how diseases impact individuals, caregivers and families, the brain and cognition. This method of research provides descriptive data and information which can provide a better picture of the clinical experience of someone with neurodegenerative diseases. This insight can assist in understanding real-world behaviors and  patterns which can arise naturally from a specific population. These findings help researchers to produce new treatment trials or strategize new ways to approach data that would better capture how populations behave.

Written by: Ashlyn O’Halloran, Penn FTD Center Clinical Research Coordinator