Quality of Life in Hereditary and Inflammatory Peripheral Neuropathies

January 5, 2026 updated by: Centre Hospitalier Universitaire de Nice

Cross-sectional Observational Study on the Impact of Neuromuscular Diseases on Quality of Life: Focus on Peripheral Neuropathies (Hereditary vs Inflammatory)

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."

Study Overview

Status

Not yet recruiting

Conditions

Intervention / Treatment

Study Type

Observational

Enrollment (Estimated)

60

Contacts and Locations

This section provides the contact details for those conducting the study, and information on where this study is being conducted.

Study Contact

Study Contact Backup

Study Locations

  • France
    • Alpes Maritimes
      • Nice, Alpes Maritimes, France, 06000

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Eligibility Criteria

Ages Eligible for Study

  • Adult
  • Older Adult

Accepts Healthy Volunteers

No

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).

Description

Inclusion Criteria:

  • 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).

Exclusion Criteria:

  • 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.

Study Plan

This section provides details of the study plan, including how the study is designed and what the study is measuring.

How is the study designed?

Design Details

Cohorts and Interventions

Group / Cohort
Intervention / Treatment
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

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 Names:
  • WHOQOL BREF questionnaire
  • MPT Questionnaire (SOTU e ATD PA)
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

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 Names:
  • WHOQOL BREF questionnaire
  • MPT Questionnaire (SOTU e ATD PA)

What is the study measuring?

Primary Outcome Measures

Outcome Measure
Measure Description
Time Frame
Quality of life (WHOQOL-BREF score)
Time Frame: At the inclusion
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 Outcome Measures

Outcome Measure
Measure Description
Time Frame
Comparison of perceived quality of life
Time Frame: At the inclusion
Comparison of perceived quality of life between HPN and IPN groups using WHOQOL-BREF scores
At the inclusion
Association between functioning and quality of life
Time Frame: At the inclusion
correlation between WHODAS 2.0 scores and WHOQOL-BREF scores.
At the inclusion
Factors associated with impaired functioning and quality of life
Time Frame: At the inclusion
identification of clinical or demographic variables linked to lower WHODAS 2.0 or WHOQOL-BREF scores.
At the inclusion
Role of assistive technologies (MPT)
Time Frame: At the inclusion
Evaluation of the impact or use of assistive technologies on functioning and quality of life.
At the inclusion
Profile of limitations
Time Frame: At the inclusion
Assessment using WHODAS 2.0 scores to describe functional limitations
At the inclusion
Activity restrictions
Time Frame: At the inclusion
Assessment using WHODAS 2.0 scores
At the inclusion
Environmental factors
Time Frame: At the inclusion
Assessment using WHODAS 2.0 scores
At the inclusion

Collaborators and Investigators

This is where you will find people and organizations involved with this study.

Sponsor

Centre Hospitalier Universitaire de Nice

Study record dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Major Dates

Study Start (Estimated)

February 1, 2026

Primary Completion (Estimated)

February 1, 2026

Study Completion (Estimated)

July 1, 2026

Study Registration Dates

First Submitted

January 5, 2026

First Submitted That Met QC Criteria

January 5, 2026

First Posted (Actual)

January 14, 2026

Study Record Updates

Last Update Posted (Actual)

January 14, 2026

Last Update Submitted That Met QC Criteria

January 5, 2026

Last Verified

January 1, 2026

More Information

Terms related to this study

Other Study ID Numbers

  • 26Neuro01

Drug and device information, study documents

Studies a U.S. FDA-regulated drug product

No

Studies a U.S. FDA-regulated device product

No

This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.

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