ULIS (Upper Limb International Spasticity), a 10-year Odyssey: An international, multicentric, longitudinal cohort of person-centered spasticity management in real-life practice

Abstract

Homer's Odyssey, one of the major Greek epic poems, tells the story of the hero Odysseus (or Ulysses in Roman versions) and his journey home to his wife Penelope. An epic poem is a long, narrative poem that is usually about heroic deeds and events that are significant to the culture of the poet. In keeping with this classic storytelling style, we describe the journey that the Upper Limb International Spasticity Study (ULIS) program has taken. The program was started in 2008 and has encountered a number of trials and obstacles along the way. This article sets out the history of development through its 10-year “Odyssey.” We use the benefit of hindsight to discuss how conducting large-scale, international observational studies can inform and influence routine practice in an area as diverse and complex as spasticity rehabilitation. We focus on the clinical pearls found within the now extensive ULIS dataset and how continually building upon the insights from each study can provide a real impetus for change.

Keywords

• botulinum toxin
• observational study
• spasticity
• upper limb