Respiratory muscle training in patients with Spinal Muscular Atrophy

Respiratory muscle training in patients with Spinal Muscular Atrophy - RESISTANT

Status

Recruiting

Phases

Unknown

Study type

Observational

Source

NL-OMON

Registry ID

NL-OMON52847

Enrollment

Registered

2020-08-10

Start date

2021-02-02

Completion date

Unknown

Last updated

2024-04-15

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Spinal Atrophy Spinal Muscular Atrophy

Interventions

None listed

Eligibility

Age

2 Years to 64 Years

Inclusion criteria

Inclusion criteria: * Patients with SMA aged >= 8 years with respiratory muscle weakness (Maximal inspiratory pressure

Exclusion criteria

Exclusion criteria: * tracheostomy, * inability to perform respiratory and/or lung-function testing, * inability to understand Dutch or English, * patients who are mentally incompetent, * patients with a history of pneumothorax or symptomatic low cardiac output syndrome * patients who start Spinraza during trial

Design outcomes

Primary

Measure	Time frame
We hypothesize that an individualized incremental home based respiratory muscle training program will be feasible (good adherence and good acceptability) and will improve inspiratory and expiratory muscle strength (primary outcome measure) and patient reported breathing difficulties, the onset of respiratory infections and health related quality of life (secondary outcome measure) in patients with SMA.	—

Measure

Time frame

We hypothesize that an individualized incremental home based respiratory muscle training program will be feasible (good adherence and good acceptability) and will improve inspiratory and expiratory muscle strength (primary outcome measure) and patient reported breathing difficulties, the onset of respiratory infections and health related quality of life (secondary outcome measure) in patients with SMA.

—

Secondary

Measure	Time frame
Reporterd airway problems by patients Number of airway infections Health related quality of life. Evaluation experience trainingsperiod.	—

Countries

Netherlands

Outcome results