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Introduction
SMA
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Overview
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Demographics
Living status
Genetic diagnosis
Clinical observations
Scoliosis
Motor function
Wheelchair usage
Nutrition
Pulmonary function
Disease-modifying therapies (DMT)
Medication and rehabilitation
Hospitalisations and comorbidities
Clinical research
Motor measures
Patient-reported outcome measures
Electrophysiology and biomarkers
DMD
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Demographics
Living status
Diagnosis
Clinical observations
Bone
Motor function
Wheelchair usage
Nutrition
Pulmonary function
Cardiac function
Therapies and medication
Hospitalisations and comorbidities
Clinical research
Patient-reported outcome measures
Biomarkers
LGMD
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Overview
Example forms
Downloads
Change log
Privacy-preserving record linkage
Demographics
Living status
Diagnosis
Clinical observations
Nutrition
Comorbidities
Motor function
Wheelchair
Motor measures
Patient-reported outcome measures
Medication and surgery
Pulmonary function
Cardiac function
Clinical research
sNMD
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Overview
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Demographics
Living status
Diagnosis
Clinical observations
Motor function
Wheelchair usage
Nutrition
Pulmonary function
Cardiac function
Disease-modifying therapies (DMT)
Comorbidities
Clinical research
Overview
Privacy-preserving record linkage
First name at birth
CR
PR
Last name at birth
CR
PR
Full date of birth
CR
PR
Sex at birth
CR
PR
Country of birth
CR
PR
Place of birth
CR
PR
Demographics
Date of birth
CR
PR
Sex
CR
PR
Country of residence
CR
PR
Is family member affected
CR
PR
datestamped
Consanguinity
CR
PR
Living status
Alive
CR
PR
datestamped
Date of death
CR
PR
Cause of death code
CR
Cause of death classification
CR
Diagnosis
LGMD type
CR
PR
Genetic confirmation
CR
PR
datestamped
Variant
CR
Variant HGVS
CR
Genetic report date
CR
Pathogenicity
CR
Muscle biopsy performed
CR
PR
Muscle biopsy date
CR
PR
Muscle MRI performed
CR
PR
Clinical observations
Symptom onset
CR
PR
datestamped
Symptom onset date
CR
PR
Symptom begin
CR
PR
Symptom
CR
PR
Symptom begin
CR
PR
Symptom begin date
CR
PR
Initial weakness location
CR
PR
Creatine kinase
removed
Creatine kinase date
removed
Initial signs
CR
Initial signs date
CR
Initial phenotype
CR
Current symptoms
CR
PR
longitudinal
Current signs
CR
longitudinal
Nutrition
Feeding tube usage
CR
PR
longitudinal
Feeding tube usage episode
CR
PR
episode
Feeding tube usage type
CR
PR
Comorbidities
Comorbidities period
CR
PR
reference period
Comorbidities diagnosed
CR
PR
Comorbidity
CR
PR
episode
Comorbidity code
CR
PR
Comorbidity classification
CR
PR
Motor function
Motor ability
CR
PR
longitudinal
Motor ability
CR
PR
Motor ability status
CR
PR
Loss of ambulation date
CR
PR
Wheelchair
Wheelchair usage
CR
PR
longitudinal
Wheelchair usage episode
CR
PR
episode
Wheelchair usage frequency
CR
PR
Motor measures
Motor measure
CR
longitudinal
Motor measure
CR
Motor measure score
CR
Motor measure collection method
CR
Patient-reported outcome measures
Patient-reported outcome measure
CR
PR
longitudinal
Patient-reported outcome measure
CR
PR
Patient-reported outcome measure score
CR
PR
Medication and surgery
Corticosteroid usage
CR
PR
longitudinal
Corticosteroid episode
CR
PR
episode
Corticosteroid administration days on
CR
PR
Corticosteroid administration days off
CR
PR
Cardiac treatment usage
CR
PR
longitudinal
Cardiac treatment episode
CR
PR
episode
Cardiac treatment
CR
PR
Other cardiac drug
CR
PR
Orthopedic surgery performed
CR
PR
datestamped
Orthopedic surgery
CR
PR
Orthopedic surgery date
CR
PR
Orthopedic surgery type
CR
PR
Pulmonary function
Invasive ventilation usage
CR
PR
longitudinal
Invasive ventilation episode
CR
PR
episode
Invasive ventilation duration
CR
PR
Non-invasive ventilation usage
CR
PR
longitudinal
Non-invasive ventilation episode
CR
PR
episode
Non-invasive ventilation duration
CR
PR
Pulmonary function test result
CR
Pulmonary function test date
CR
Forced vital capacity volume
CR
Forced vital capacity percentage
CR
Peak cough flow
CR
Spirometry position
CR
Cardiac function
Cardiomyopathy
CR
PR
datestamped
Cardiomyopathy diagnosis date
CR
PR
Arrhythmia
CR
PR
datestamped
Arrhythmia diagnosis date
CR
PR
Cardiac imaging performed
CR
datestamped
Cardiac imaging result
CR
Cardiac imaging date
CR
Cardiac imaging type
CR
Left ventricular ejection fraction
CR
Fractional shortening
CR
Electrocardiography results
CR
Clinical research
Clinical trial participation
CR
PR
Clinical trial
CR
PR
Clinical trial name
CR
PR
Clinical trial drug
CR
PR