Living Beyond the Diagnosis

9:45am-12pm – clinic visit and longitudinal study enrollment

This study aims to create a clinical-trial ready cohort for patients with neurodegenerative movement disorders including Parkinson disease, Multiple System Atrophy and Cerebellar ataxia. They track participants in a clinical setting with longitudinal neuroimaging, quantitative video-oculography, biometric assessments and clinical measurements.

Longitudinal Neuroimaging – Functional magnetic resonance imaging (fMRI) investigations of a longitudinal nature, where participants are scanned repeatedly over time and imaging data are obtained at more than one time-point, are essential to understanding functional changes and development in healthy and pathological brains. Such datasets consist of a collection of time series, one contributed from each of a number of subjects in a designed experiment or observational study. The distinguishing feature of data collected longitudinally, then, is that each subject’s outcome/responses are observed or measured repeatedly, thereby allowing for the direct study of change over time or natural history. This setup is advantageous compared to cross-sectional studies (where, in contrast, subject responses are obtained at just one time-point). For example, a longitudinal study is more powerful for a fixed number of subjects, it allows each subject to serve as his/her own control, it permits the separation of aging effects from cohort effects, and it can provide information about individual change. The fundamental objective of a longitudinal analysis is therefore to assess within-individual changes in the response and to explain systematic differences among individuals in their changes.

Quantitative Video-Oculography – Video-oculography (VOG) is a non-invasive test that uses video cameras to track eye movements and can be used to help diagnose multiple system atrophy (MSA). VOG can more accurately record eye movements than a bedside clinical exam, making it more sensitive for detecting subtle ocular motor abnormalities.

VOG can quantitatively assess oculomotor impairments in MSA. Eye movement abnormalities such as gaze-evoked nystagmus, skew deviation, and positioning downbeat nystagmus can indicate MSA over Parkinson’s disease (PD).

VOG can be used to record eye movements in four positions (up, down, left, and right) over 20 seconds in each position. It can also record smooth pursuit eye movement (SPEM) by asking participants to look at a moving target that moves horizontally or vertically at different frequencies and amplitudes.

Biometric Assessments & Clinical Measurements

 – The first biometric they collect is your eye movements. They do this through video-oculography (VOG), which is an examination that takes about 30 minutes and consists of quantitatively tracking eye movements using special glasses with a camera and pupil-tracking software. Subtle differences in eye movements can be very helpful in differentiating across neurodegenerative movement disorders. They also believe they can be helpful as a marker to track disease progression.

They videotape the different clinical scales that are part of the movement disorders evaluation, both to keep a video record of the symptom burden at the time of the visit, but also to work toward creating computer vision algorithms to better quantitative neurologic signs such as tremor and slowness.

The patients are also sent home with a set of accelerometers, which track your movements for one week straight, and you are asked to complete speech and computer surveys that assess speech patterns and motor function. These help them obtain quantitative measures of disease progression.

The Impact

Participating in the MyTrial program has been incredibly rewarding. Not only do I feel that I am receiving top-notch care, but I also know that my involvement is contributing to vital research. The tests and assessments, though sometimes tiring, provide crucial information that could lead to better treatments for MSA and other similar disorders.

Encouragement for Others

If you have MSA or another neurodegenerative movement disorder, I encourage you to consider participating in a program like MyTrial. It offers a unique opportunity to contribute to research that might one day lead to a cure. The comprehensive testing and monitoring help track the disease more accurately, which can lead to better management of symptoms.

Conclusion

My experience with the MyTrial program at Khurana Labs has been a beacon of hope in my journey with Multiple System Atrophy. The dedication and expertise of the team at Brigham and Women’s Hospital have made a significant difference in my life. By participating in this program, I feel empowered and hopeful for the future, not just for myself but for everyone affected by these challenging diseases.

If you’re navigating life with MSA, remember you’re not alone. There are amazing programs out there like MyTrial that are making strides in understanding and combating these disorders. Together, we can contribute to a brighter future for all.

~Coach~