Viewing Study NCT04447196



Ignite Creation Date: 2024-05-06 @ 2:50 PM
Last Modification Date: 2024-10-26 @ 1:38 PM
Study NCT ID: NCT04447196
Status: UNKNOWN
Last Update Posted: 2021-07-12
First Post: 2020-05-30

Brief Title: Prevalence of Rest Dyspnea and Impact of Non Invasive Ventilation on Breathing Sensations in CCHS Patients
Sponsor: Association pour le Développement et lOrganisation de la Recherche en Pneumologie et sur le Sommeil
Organization: Association pour le Développement et lOrganisation de la Recherche en Pneumologie et sur le Sommeil

Study Overview

Official Title: Prevalence of Rest Dyspnea and Impact of Non Invasive Ventilation on Breathing Sensations in Patients With Congenital Central Hypoventilation Syndrome
Status: UNKNOWN
Status Verified Date: 2021-07
Last Known Status: NOT_YET_RECRUITING
Delayed Posting: No
If Stopped, Why?: Not Stopped
Has Expanded Access: False
If Expanded Access, NCT#: N/A
Has Expanded Access, NCT# Status: N/A
Acronym: DyspnOndine
Brief Summary: Congenital central hypoventilation syndrome CCHS is a neuro-respiratory disease characterized by lifethreatening sleep-related hypoventilation involving an alteration of CO2H chemosensitivity This suggests cortical activity during awakening to maintain breathing Cortical activity to keep breathing is usually associated with breathing discomfort this is the case in healthy subjects under non invasive ventilation NIV or with expiratory charge as well as in patients with amyotrophic lateral sclerosis This can suggest that CCHS may be breathless at rest and this discomfort could be reduced by NIV

The objective is to evaluate dyspnea with a multi dimensional score MDP in CCHS patient at rest in every day life and during 1H session of NIV

The investigators will perform a prospective including 20 CCHS patients MDP scores will be measure before and after 1H-non invasive ventilation as well as a visual scale of 100mm in order to evaluate variation of breathing discomfort beforeafter NIV

The investigators expect that CCHS patients dont have rest dyspnea but NIV would improve breathing discomfort that would mean they have latent rest dyspnea
Detailed Description: None

Study Oversight

Has Oversight DMC: None
Is a FDA Regulated Drug?: False
Is a FDA Regulated Device?: False
Is an Unapproved Device?: None
Is a PPSD?: None
Is a US Export?: None
Is an FDA AA801 Violation?: None