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| Name | Class |
|---|---|
| Neuroresp, Reference centre Syndrome d'Ondine | UNKNOWN |
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Phrenic nerve stimulation is a neurostimulation technique that allows patients who are dependent on external mechanical ventilatory support to regain their breathing autonomy. This study aim at long term following of patients who may be candidates for permanent implanted phrenic nerve stimulator.
During 10 years, the study will be conduct to obtain the quality of life evolution and medical complications in patients candidates but not implanted, and in patients candidates then implanted with the phrenic nerve stimulator.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| ventilatory paralysis | dependence on mechanical ventilatory support |
| |
| central hypoventilation | documented permanent or nocturnal hypoventilation |
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Quality of life questionnaires | Other | During 10 years, the study will be conduct to obtain the quality of life evolution and medical complications in patients candidates but not implanted, and in patients candidates then implanted with the phrenic nerve stimulator. |
| Measure | Description | Time Frame |
|---|---|---|
| Score at the Medical Outcomes Study Short-Form General Health Survey (SF-12) scale in patients with implanted phrenic nerve stimulator | Evolution of the physical (score between 9.95 and 70.02) and mental (score between 5.89 and 71.97) dimensions included into the SF-12 scale in patients with implanted phrenic nerve stimulator before, and up to 10 years after the implantation | 10 years |
| Measure | Description | Time Frame |
|---|---|---|
| Number of evolving episodes involving care, whether pathology events or intercurrent events | Follow-up of complications in implanted patients compared with the natural course of the disease (i.e. non-implanted patients) | 10 years |
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Inclusion Criteria:
Exclusion Criteria:
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Patients adressed to the Respiratory and Medical Resuscitation Unit of the Pitié-Salpêtrière Charles Foix Hospital Group for the search for an indication of SPi in the context of central ventilatory paralysis or central hypoventilation, whether or not the indication is retained at the end of the balance sheet; this population is essentially made up of adults, some but not all of whom benefit from a protection regime; it may occasionally include minors;
Patients addressed to the adult branch of the Rare Disease Reference Center for Congenital Central Venous Hypoventilation, located within the hospital group Pitié-Salpêtrière Charles Foix, for the assessment and monitoring of their disease. By definition, this population consists solely of adults.
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Thomas SIMILOWSKI, PU-PH,MD,PhD | Contact | 01 42 16 77 97 | 0033 | thomas.similowski@upmc.fr |
| Sophie LAVAULT, PhD | Contact | 0142178196 | 0033 | sophie.lavault@aphp.fr |
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Thomas SIMILOWSKI | Recruiting | Paris | Île-de-France Region | 75013 | France |
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