Observational Studies

Observational studies (sometimes called “natural history” studies) allow us to learn more about how the brain works under normal aging and how diseases progress.  An observational study does not have an intervention – there is no treatment or therapy being tested.  Instead, we learn more about how disease may affect people, and, in some studies, new ways to identify or categorize disease.

The Boxer Lab conducts observational studies of neurodegenerative disease and healthy aging.  Most of our observational studies focus on frontotemporal lobar degeneration (FTLD) syndromes.  For more about specific studies, please go here

This page describes a few of the things that may be part of an observational study.  These assessments are designed to help us learn how the brain works and how that changes in neurodegenerative disease.

  • Neurological and physical exam – are you healthy? Do you have signs or symptoms from a neurological disease? If so, what are they? Are other things in your health affecting how your brain functions?
  • Cognitive testing (“thinking tests”) measure how your brain functions. Some of these are designed to be very challenging, so don’t worry if you find them difficult!
  • Blood draws give us information about different levels or types of proteins in the blood. These protein levels may help with diagnosis in the future.  Blood tests may also be used for “research genotyping”, investigating whether different genes are associated with different forms of neurodegenerative disease. 
  • A lumbar puncture (also known as an LP or colloquially as a “spinal tap” extracts a small amount of Cerebrospinal fluid (CSF) to show protein levels; sometimes certain proteins can only be measured in CSF.  Not all studies require LPs.
  • Brain imaging includes MRI, which helps us see changes in the structure of the brain, such as atrophy due to disease.  
  • Some studies also use PET imaging.  PET imaging uses a radio-active tracer to “label” proteins in the brain, to help us see patterns of abnormal protein accumulation.

We also employ additional technologies, such as oculomotor (eye movement) testing and OCT (retinal thickness measurements). 

Together, all of these different tests help us understand neurodegenerative diseases better.  They also help us develop new tools for diagnosing and assessing diseases, which may make clinical trials more effective in evaluating therapeutic benefit.


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