Gillette is one of just 14 U.S. hospitals designated as a Clinical Research Center of Excellence by the Rett Syndrome Foundation. Because we believe that clinical research in Rett syndrome promotes the highest standards of care, we also join with researchers at the University of Minnesota to provide evidence-based medicine.

The goals of Rett syndrome research at Gillette are to:

  •  Inform optimal clinical management of patients who have Rett syndrome.
  •  Develop reliable, sensitive outcome measures for clinical trials.

Characterizing Autonomic Function in Rett Syndrome

Rett syndrome is often associated with autonomic dysfunction, such as hyperventilation, breath holding or cold hands and feet. Our goal is to improve scientific understanding of autonomic function in Rett syndrome to improve clinical care. Specific objectives include improving assessment by using non-invasive methods to measure autonomic nervous system function, response to environmental challenge, and whether response patterns change over time or are stable.  

Led by Arthur Beisang, MD, Timothy Feyma, MD, Frank Symons, PhD, Breanne Byiers , PhD,  and Chantel Barney, PhD.

Select ongoing studies:

  • Infrared thermal analysis and autonomic function in Rett syndrome.
  • Characterization of diurnal salivary cortisol in Rett syndrome.
  • Assessing sleep patterns in Rett syndrome.
  • Repeated measures assessment of the stability of physiological biomarkers in Rett syndrome including heart rate, breathing, and temperature of the hands and feet.

Characterizing Pain Experience and Sensory Function in Rett Syndrome

Rett syndrome is often associated with chronic health conditions that might cause pain or discomfort. We use noninvasive methods to document pain experience and somatosensory function. We are also investigating the underlying biology of sensory nerve innervation pathways. These studies provide clinically relevant information applicable to optimizing pain treatment and care of our patients who have Rett syndrome.  

Led by Arthur Beisang, MD, Timothy Feyma, MD, Frank Symons, PhD, Breanne Byiers , PhD,  and Chantel Barney, PhD.

Select Ongoing Studies:

  • Characterizing pain experience and somatosensory function in Rett syndrome.
  • Evaluating peripheral epidermal nerve fiber density in Rett syndrome.
  • Assessing the function of pain pathways in Rett syndrome via heat-evoked potentials.
  • Documenting inflammatory and anti-inflammatory biomarkers in the saliva of individuals with Rett syndrome.

Recent Publications