Longitudinal Ulnar Deficit (ULNEER)
For patients and families
In plain language
An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.
- What is being studied
- This is an observational study: the protocol does not assign a study treatment.
- Who it may be relevant to
- Registry conditions: Ulnar Longitudinal Deficiency, Ulnar Hand Deformity. Basic parameters: 3 years — 18 years · All.
- What needs checking
- Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
- Where it takes place
- France
- Next step
- Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →
Unsure about the terms? Read our patient guide →
Official title
Prospective and Retrospective Observational Study on Longitudinal Ulnar Deficit: Analysis of Existing Medical Data and Parental Questionnaires
Overview
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.
Primary outcome measures
- Upper limb function and health-related quality of life (PROMIS Upper Extremity and ABILHAND-Kids) [Time frame: From baseline to study completion (up to 10 months)]
Secondary outcome measures (3)
- Upper limb functional ability score [Time frame: From baseline to study completion (up to 10 months)]
- Pediatric upper limb function [Time frame: From baseline to study completion (up to 10 months)]
- Pediatric health-related quality of life [Time frame: From baseline to study completion (up to 10 months)]
Eligibility criteria
Inclusion criteria
- Patients with unilateral or bilateral ulnar hand deformity, whether operated on or not
- Follow-up at CEREFAM and/or Trousseau Hospital
- Complete medical records containing previous assessments
Exclusion criteria
- Non-French-speaking patient
- No preoperative or postoperative assessment
Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.
Healthy volunteers: No
Study design
- Observational model
- Cohort
Study locations
France · 1 center
- Hôpitaux Paris Est Val-de-Marne - Centre de Référence des Malformations des Membres — Saint-Maurice
Identifiers
NCT: NCT07404514 · ULNEER · 2025-A02482-47