Professional Documents
Culture Documents
Clinic Checklist Leach
Clinic Checklist Leach
Clinic Checklist Leach
Goal for 2 checklists Broad recommendations Ideal clinic Almost ready. Keep an eye out for them on CureCMD.org
Clinic Checklist
Recommendations for care Easy to reference Some specific recommendations
Decrease the discrepancy in the quality of care Focus on health promotion, preventative care When to refer to specialist Not a substitution for good clinical judgment
Clinic Checklist
Population-specific
Age groups <6 years old 6-15 years old 16-25 years old: transition to adulthood
Subspecialty
Neuromuscular; Pulmonary; Cardiac; GI, speech/swallow, nutrition; Rehabilitation; Orthopedics; Bone Health; Psychosocial
Subspecialty recommendations
Frequency of evaluations
Minimum frequency, more often if concerns
Surveillance
Special considerations
Malignant-hyperthermia
Hospitalizations
Common reasons for hospitalizations at this age: failure to thrive, respiratory failure, respiratory infections, and seizures
If a diagnosis of aDG or L-CMD
Assisted Airway Clearance indications & modalities Noninvasive ventilation indications Special considerations
In patients with rigid spine, axial weakness and/or diagnoses of SEPN1-related myopathy, COL6 myopathies and lamin A/C...
Sedated procedures Acute illness Cardiac management Routine evaluation with electrocardiogram and echocardiogram Special Considerations
If mutations in LAMA2, L-CMD or aDG (FKTN, FKRP)
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Clinic Checklist
Work in progress
As science evolves, clinical care should evolve
Basic recommendations
Not patient specific
Thank You
All the clinicians who have taught me to love caring for patients with CMD The specialists who developed the initial guidelines (Wang, et al) Anne Rutkowski, MD & Carsten Bonnemann, MD The specialists who helped me fine-tune these recommendations The families of children with CMD
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The End
(for now)
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