Quality of Life in Hereditary and Inflammatory Peripheral Neuropathies

NCT07340749 | Not Yet Recruiting

• 1 other identifier: 26Neuro01
• Study Type: observational
• Target: 60
• Locations: 1 country
• Sites: 1

Brief Summary

Neuromuscular diseases affect the nerves and muscles and can cause weakness, pain, fatigue, and difficulties in daily life. These problems may reduce independence, social participation, and overall quality of life.This observational study aims to evaluate the impact of peripheral neuropathies on quality of life. It focuses on two types of peripheral neuropathies: hereditary neuropathies, caused by genetic factors, and inflammatory neuropathies, caused by immune-related nerve damage. Adult patients with these conditions will be assessed at a single time point, without any change to their usual medical care. Participants will complete questionnaires about daily functioning, well-being, and quality of life. Some questions will also explore the use of assistive devices and supportive tools in everyday life.The study hypothesizes that peripheral neuropathies significantly affect quality of life and that this impact differs between hereditary and inflammatory forms. The results aim to improve understanding of patients' needs and support better, more personalized care."

Conditions

Hereditary and Inflammatory Peripheral Neuropathies

Outcome Measures

Primary Outcomes (1)

• Quality of life (WHOQOL-BREF score)

  Quality of life (WHOQOL-BREF score) at baseline (M0) in patients with hereditary peripheral neuropathy (HPN) and inflammatory peripheral neuropathy (IPN)

  At the inclusion

Secondary Outcomes (7)

• Comparison of perceived quality of life

  At the inclusion

• Association between functioning and quality of life

  At the inclusion

• Factors associated with impaired functioning and quality of life

  At the inclusion

• Role of assistive technologies (MPT)

  At the inclusion

• Profile of limitations

  At the inclusion

Study Arms (2)

Patients with Hereditary peripheral neuropathies

"WHODAS 2.0: Assesses daily functioning and disability across six domains: understanding, mobility, self-care, interpersonal relationships, domestic activities, and social participation. WHOQOL-BREF: Measures overall quality of life in four domains: physical, psychological, social relationships, and environment. MPT Questionnaire (SOTU and ATD PA): Evaluates participants' attitudes, perceptions, and professional practices in a specific organizational or educational context."

Other: WHODAS 2.0 questionnaire

Patients with inflammatory peripheral neuropathies

"WHODAS 2.0: Assesses daily functioning and disability across six domains: understanding, mobility, self-care, interpersonal relationships, domestic activities, and social participation. WHOQOL-BREF: Measures overall quality of life in four domains: physical, psychological, social relationships, and environment. MPT Questionnaire (SOTU and ATD PA): Evaluates participants' attitudes, perceptions, and professional practices in a specific organizational or educational context."

Other: WHODAS 2.0 questionnaire

Interventions

WHODAS 2.0 questionnaire OTHER

WHODAS 2.0: Assesses daily functioning and disability across six domains: understanding, mobility, self-care, interpersonal relationships, domestic activities, and social participation. WHOQOL-BREF: Measures overall quality of life in four domains: physical, psychological, social relationships, and environment. MPT Questionnaire (SOTU and ATD PA): Evaluates participants' attitudes, perceptions, and professional practices in a specific organizational or educational context.

Also known as: WHOQOL BREF questionnaire, MPT Questionnaire (SOTU e ATD PA)

Patients with Hereditary peripheral neuropathies; Patients with inflammatory peripheral neuropathies

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: No
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

The study will include two groups of patients. Group A will consist of 30 patients with hereditary peripheral neuropathy (e.g., Charcot-Marie-Tooth disease and other HPNs). Group B will include 30 patients with inflammatory peripheral neuropathy (e.g., acute or chronic inflammatory demyelinating polyneuropathies, autoimmune neuropathies).

You may qualify if:

• Clinical and paraclinical diagnosis compatible with hereditary or inflammatory peripheral neuropathy, confirmed by the investigating physicians (genetic results for HPN if available; clinical/electrophysiological criteria for IPN).
• Written informed consent.
• Ability to complete the questionnaires (or with the assistance of a caregiver if necessary, specifying the mode of assistance).

You may not qualify if:

• Legal incapacity (under guardianship or conservatorship).
• Moderate to severe cognitive impairment (e.g., MMSE \< 27) preventing valid comprehension and completion of the questionnaires.
• Active cancer undergoing chemotherapy or radiotherapy (treatment likely to significantly alter quality of life in a non-specific way).
• Other acute serious medical conditions that could interfere with assessment, at the investigator's discretion.

Sponsors & Collaborators

• Centre Hospitalier Universitaire de Nice: lead

Study Sites (1)

CHU de Nice

Nice, Alpes Maritimes, 06000, France

Location

Central Study Contacts

Sabrina Sacconi

CONTACT

0492038953; sacconi.s@chu-nice.fr

Slioui :Abderhmane

CONTACT

0492038953; :slioui.a@chu-nice.fr

Study Design

• Study Type: observational
• Observational Model: CASE CONTROL
• Time Perspective: CROSS SECTIONAL
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: January 5, 2026
• First Posted: January 14, 2026
• Study Start: February 1, 2026
• Primary Completion: February 1, 2026
• Study Completion (Estimated): July 1, 2026
• Last Updated: January 14, 2026

Record last verified: 2026-01

Locations

FR (1)