Clinical Research Directory

Longitudinal Ulnar Deficit (ULNEER)

Sponsor: Hopitaux de Saint-Maurice

Summary

The management of patients with longitudinal ulnar deficiency is a clinical challenge due to the rarity of this condition and the wide variety of its manifestations. In particular, there is no consensus in the literature on the indications for surgery. The aim of this research is to improve understanding and management of this malformation by analyzing existing data from patient medical follow-up. No new clinical evaluations or occupational therapy assessments will be performed specifically for this study. The analysis will be based on previous medical and paramedical data (consultation reports, imaging, occupational therapy assessments, etc.) in order to better describe the functional evolution of patients and identify the decision-making criteria that guide surgical management. Parents will also receive standardized questionnaires (PROMIS and ABILHAND-Kids-CP) to gather their perceptions of their child's quality of life and independence. The results will be used to propose recommendations for a more consistent and multidisciplinary assessment of longitudinal ulnar deficit in the future.

Official title: Prospective and Retrospective Observational Study on Longitudinal Ulnar Deficit: Analysis of Existing Medical Data and Parental Questionnaires

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