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Introduction
SMA
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Overview
Example forms
Downloads
Change log
Privacy-preserving record linkage
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
Home
Overview
Example forms
Downloads
Privacy-preserving record linkage
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
Home
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
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
Living status
Alive
CR
PR
datestamped
Date of death
CR
PR
Cause of death code
CR
Cause of death classification
CR
Diagnosis
Diagnosis date
Diagnosis method
Genetic confirmation
CR
PR
Genetic diagnosis
CR
PR
Screening
CR
Genetic report
CR
PR
Genetic report date
CR
PR
DMD variant CNV
CR
DMD variant HGVS
CR
DMD testing method
CR
Clinical observations
Symptom onset
datestamped
Symptom onset date
Height
CR
longitudinal
Height
CR
Height measurement method
CR
Weight
CR
PR
longitudinal
Bone
Scoliosis diagnosis
CR
PR
longitudinal
Scoliosis surgery performed
CR
PR
longitudinal
Scoliosis surgery
CR
Scoliosis surgery date
CR
Scoliosis surgery type
CR
Spinal fractures diagnosed
CR
PR
datestamped
Spinal fracture date
CR
Non-spinal fractures period
CR
PR
reference period
Non-spinal fractures diagnosed
CR
PR
Non-spinal fracture
Non-spinal fracture date
Non-spinal fracture location
Non-spinal fracture side
Motor function
Motor ability
longitudinal
Motor ability
Motor ability status
Motor measure
CR
longitudinal
Motor measure
CR
Motor measure score
CR
Wheelchair usage
Wheelchair usage
CR
PR
longitudinal
Wheelchair usage episode
CR
PR
episode
Wheelchair usage frequency
CR
PR
Nutrition
Feeding tube usage
CR
PR
longitudinal
Feeding tube usage episode
CR
episode
Feeding tube usage type
CR
PR
Pulmonary function
Non-invasive ventilation usage
CR
PR
longitudinal
Non-invasive ventilation episode
episode
Non-invasive ventilation duration
Invasive ventilation usage
CR
PR
longitudinal
Invasive ventilation episode
episode
Invasive ventilation duration
Airway clearance assistance
CR
PR
longitudinal
Airway clearance technique
PR
longitudinal
Pulmonary function test result
CR
Pulmonary function test date
CR
Forced vital capacity volume
CR
Forced vital capacity percentage
CR
Spirometry position
Peak cough flow
CR
Cardiac function
Cardiac imaging performed
CR
PR
datestamped
Cardiac imaging result
CR
Cardiac imaging date
CR
Cardiac imaging type
CR
Left ventricular ejection fraction
CR
Fractional shortening
CR
Therapies and medication
DMT received
CR
PR
datestamped
DMT episode
CR
PR
episode
DMT
CR
PR
DMT status
CR
PR
DMT stopping reason
CR
PR
Corticosteroid usage
CR
PR
longitudinal
Corticosteroid episode
CR
PR
episode
Corticosteroid drug
CR
PR
Corticosteroid administration days on
CR
PR
Corticosteroid administration days off
CR
PR
Corticosteroid dosage
CR
PR
Corticosteroid stopping reason
CR
PR
Cardiac treatment usage
CR
PR
longitudinal
Cardiac treatment episode
CR
episode
Cardiac treatment
CR
Other cardiac drug
CR
Cardiac treatment stopping reason
CR
Allopathic drugs
CR
PR
reference period
Allopathic drug usage
CR
PR
Allopathic drugs
CR
PR
Other allopathic drugs
CR
PR
Allopathic drug episode
CR
PR
episode
Allopathic drug
CR
PR
Other allopathic drug
CR
PR
Allopathic drug stopping reason
CR
PR
Rehabilitative interventions
reference period
Rehabilitative interventions usage
Rehabilitative interventions
Hospitalisations and comorbidities
Hospitalisation period
reference period
Hospitalisation occurred
Hospitalisation
Hospitalisation type
Hospitalisation admission date
Hospitalisation nights
Hospitalisation acute reason code
Hospitalisation acute reason classification
Hospitalisation planned reason
Hospitalisation SAE
Hospitalisation SAE DMT
Comorbidities period
CR
PR
reference period
Comorbidities diagnosed
CR
PR
Comorbidity
CR
episode
Comorbidity code
CR
Comorbidity classification
CR
Comorbidity SAE
Comorbidity SAE DMT
Clinical research
Clinical trial participation
longitudinal
Clinical trial
Clinical trial NCT number
Clinical trial name
Clinical trial drug
Other registry participation
CR
PR
datestamped
Other registry
CR
PR
datestamped
Patient-reported outcome measures
Patient-reported outcome measure
longitudinal
Patient-reported outcome measure
Patient-reported outcome measure score
Biomarkers
DEXA performed
datestamped
Muscle imaging performed
datestamped
Muscle biopsy performed
datestamped
Muscle biopsy
Muscle biopsy date
Muscle biopsy purpose
Muscle biopsy stored in biobank
Muscle biopsy biobank