NCT04447196|Unknown
Prevalence of Rest Dyspnea and Impact of Non Invasive Ventilation on Breathing Sensations in CCHS Patients
DyspnOndine
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DyspnOndine
Sponsor study identifier
observational
20
1 country
1
Study Start
December 15, 2021
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Primary Completion
October 1, 2022
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Study Completion
October 1, 2022
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Congenital central hypoventilation syndrome (CCHS) is a neuro-respiratory disease characterized by lifethreatening sleep-related hypoventilation involving an alteration of CO2/H+ 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 before/after NIV. The investigators expect that CCHS patients don't have rest dyspnea but NIV would improve breathing discomfort that would mean they have latent rest dyspnea.
Registry-reported information. Elapsed time and enrollment totals alone do not measure study progress or recruitment pace.
October 1, 2022
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Dates and qualifiers reported by the registry. Estimated dates do not confirm that a milestone has occurred.
May 30, 2020
Actual (reported)June 25, 2020
Actual (reported)December 15, 2021
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October 1, 2022
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October 1, 2022
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"Immediate unpleasantness" corresponding to A.1 item of the multidimensional dyspnea profile
Measure MDP scores before and after NIV
Change in MDP score between baseline and after 1 hour of NIV
20 patients presenting with central hypoventilation syndrome during spontaneous breathing and with Non Invasive Ventilation
Multi dimensional dyspnea profile scores at rest and during non invasive ventilation
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Adults with CCHS who already require long terme NIV but not phrenic nerve stimulation
INSERM-UPC UMR_S 1158, Service de Pneumologie et Réanimation, GH Pitié-Salpêtrière
Paris, 75013, France
First Submitted
May 30, 2020
First Posted
June 25, 2020
Study Start
December 15, 2021
Estimated (date passed)This estimate has passed. The registry has not confirmed an actual date for this milestone.
Primary Completion
October 1, 2022
Estimated (date passed)Effectiveness of an Exercise Re-training Program on Dyspnea in Patients After Acute Respiratory Distress Syndrome Secondary to Severe COVID-19 Pneumonia in Post-ICU
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Study Completion
October 1, 2022
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Last Updated
July 12, 2021
Record last verified: 2021-07
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