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NCT Number: NCT07340749

Quality of Life in Hereditary and Inflammatory Peripheral Neuropathies

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."

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Key information

Age range

18 year and older

Sex eligibility

All sexes

Study type

Observational

Primary location

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

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.

Treatment and study plan

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.

Other names: WHOQOL BREF questionnaire, MPT Questionnaire (SOTU e ATD PA)

Primary outcomes

  1. 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)

Secondary outcomes

  1. 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

  2. Association between functioning and quality of life

    Time frame: At the inclusion

    correlation between WHODAS 2.0 scores and WHOQOL-BREF scores.

  3. 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.

  4. 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.

  5. Profile of limitations

    Time frame: At the inclusion

    Assessment using WHODAS 2.0 scores to describe functional limitations

  6. Activity restrictions

    Time frame: At the inclusion

    Assessment using WHODAS 2.0 scores

  7. Environmental factors

    Time frame: At the inclusion

    Assessment using WHODAS 2.0 scores

Study contacts

Contact information is provided by the study sponsor or research team.

Sabrina Sacconi

CONTACT

[email protected]

0492038953 ext. + 33

Slioui :Abderhmane

CONTACT

:[email protected]

0492038953 ext. +33

Sponsors and collaborators

Lead sponsor

Centre Hospitalier Universitaire de Nice

Other

Registry information

Official study title

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

Important dates

Study start
2026
Primary completion
2026
Study completion
2026
First posted
Jan 14, 2026
Registry last updated
Jan 14, 2026

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.