Wheelchair Positioning and Neuromuscular Diseases

NCT ID: NCT05006859

Last Updated: 2025-03-11

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

RECRUITING

Total Enrollment

50 participants

Study Classification

OBSERVATIONAL

Study Start Date

2021-05-17

Study Completion Date

2025-12-31

Brief Summary

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This database will describe sitting postural control in wheelchair, as well as PW pain, and pressure ulcers associated with sitting, in patients with neuromuscular disease (NMD).

Detailed Description

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Neuromuscular diseases are genetic diseases of the muscle or its innervation (nerve connection) causing respiratory, cardiac and especially motor difficulties which may require use of wheelchair. However there is no standardized positioning protocol, so it seems interesting to us to study wheelchair positioning in neuromuscular diseases).

The purpose of this study is to describe sitting posture in the wheelchair in patients with neuromuscular disease, pain associated with using the wheelchair, but also to assess the effectiveness of the recommended equipment making the same evaluations in follow-up consultation (a few months after receipt of the prescribed TAP).

Posture is assessed by the tool: Measurement of Postural Control in Seated Postural Control Measure for Adults 2.0 (SPCMA 2.0), which is a validated tool.

Pain is assessed by a Simple Verbal Scale or by a Visual Analog Scale. This database could allow providing guidelines of good practice, for wheelchair positioning for patients with neuromuscular disease.

Conditions

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Neuromuscular Diseases

Study Design

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Observational Model Type

COHORT

Study Time Perspective

PROSPECTIVE

Interventions

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Cohorte

Assessment of postural wheelchair disorders, as well as PW pain, and pressure ulcers associated with sitting

Intervention Type OTHER

Other Intervention Names

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Questionnaire

Eligibility Criteria

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Inclusion Criteria

* Patient with neuromuscular disease
* Written informed consent (IC) obtained
* Adult patients (\> 18 years) Or
* Adults under guardianship who has given theirs oral consent and guardian's consent obtained Or
* Childs who has given theirs oral consent and parents' consent obtained
* Wheelchair user

Exclusion Criteria

• Patient not seen in positioning consultation by N. Pellegrini and / or E. Dupitierr
Minimum Eligible Age

8 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Association Française contre les Myopathies (AFM), Paris

OTHER

Sponsor Role collaborator

Groupement Hospitalier Intercommunal du Vexin

OTHER

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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Nadine Pellegrini

Role: PRINCIPAL_INVESTIGATOR

Groupement Hospitalier Intercommunal du Vexin

Locations

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Groupement Hospitalier Intercommunal du Vexin / Site d'Aincourt - Pôle Soins de Suite et de Réadaptation spécialisés

Aincourt, , France

Site Status RECRUITING

Clinique du Positionnement de l'AFM

Évry, , France

Site Status RECRUITING

Countries

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France

Central Contacts

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Maryline Delattre

Role: CONTACT

+331.30.75.41.31

Audrey Gilibert

Role: CONTACT

+331.30.75.40.40 ext. 72.57

Facility Contacts

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Nadine Pellegrini, Dr

Role: primary

+33 1 34 79 44 75

Elise Dupitier

Role: primary

+33 1 69 47 28 28

Other Identifiers

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GHIV0321

Identifier Type: -

Identifier Source: org_study_id

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