Volume 524 - Citizen Science for Health 2025 (CS4Health2025) - Impact, Monitoring, Assessment & Evaluation - Oral Presentation
A single-case (N-of-1) study of Tourette syndrome using personal science to support self-care
M. de Groot
Full text: pdf
Published on: June 30, 2026
Abstract
Tourette syndrome is a neurodevelopmental condition characterized by repetitive movements and vocalizations (tics) that are difficult to control. It can be explored through observable phenomena such as tic frequency, intensity, and context, including situations like stress, rest, and periods of treatment. This raises the question of how these patterns vary for an individual in daily life and how they change in response to treatment.

This single-case (N-of-1) study applies the personal science framework to investigate tic patterns and treatment effects. I tracked my tics daily using a wearable self-tracking instrument, a web-based data analytics and visualization tool, and a paper journal. Data were collected over 330 consecutive days (n = 5,933 observations), including a baseline phase (2.5 months), a treatment phase (7 months), and a follow-up phase (1 month).

Contrary to expectations, tic frequency increased during treatment by a factor of 3.6 and stabilized post-intervention at 1.7 times the baseline level. Despite this, I experienced a substantial improvement in well-being. Treatment changed my relationship with the tics: increased awareness, coping skills, and acceptance reduced distress. Structured self-observation supported my self-care and improved communication with healthcare providers.

This case study illustrates how personal science can complement clinical care and demonstrates its value as a form of citizen science for health.
DOI: https://doi.org/10.22323/1.524.0024
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