Biliary atresia is the most severe form of cholestatic liver disease. The children have high morbidity and mortality and get devastating pruritus and fatigue, failure to thrive, progressive hepatic failure and impaired neurodevelopment. The etiology is mostly unknown. More than half need a new liver from a living or deceased donor during childhood. However, correct timing of the transplantation is extremely difficult because of lack of consensus based on clinical assessment tools. All though the incidence is low, the cost of this disease is tremendous from both a clinical and human perspective. So far, protocolized neurodevelopment tests, genetic profiling, precise malnutrition evaluation based on clinical appearance, biochemical markers and brain MRI-scans, body composition, immunological function, level of physical activity and optimal time of transplantation in cholestatic children are unknown. The aim is to determine risk factors for neurocognitive impairment in children suffering from severe cholestasis in order to determine optimal time for liver transplantation from a brain perspective. In a prospective study, the investigators will investigate risk factors related to brain-, heart-, gut- and immunological function in the Danish cohort. This cohort consists of 75 children aged 0-18 years. In addition, 30 aged and gender matched healthy and 20 tetra fallot children will serve as control groups. The children will undergo extensive and advanced liver function evaluation, genetic profiling, nutrition and immunological status, neuro-imaging and neurocognitive evaluation at time of diagnose, 2 years of age, pre-school, pre-teenage, and teenage. In case of a liver transplantation, additional neuro-cognitive tests will be performed
Study Type
OBSERVATIONAL
Enrollment
100
Neurocognitive tests and MRI of the brain
Rigshospitalet
Copenhagen, Denmark
RECRUITINGMRI of the brain
% of patients with anatomic anomalies on MRI of the brain
Time frame: Inclusion
Neurocognitive status: Early movement repertoire (General movement)
Neurocognitive test panel depending on age at inclusion % of patients with of abnormal movement assessed using early movement repertoire (GM) if inclusion at diagnosis. Early movement repertoire is a measurement tool where abnormal movement is identified.
Time frame: Inclusion
Neurocognitive status: Alberta Infant Motor Scale
Neurocognitive test panel depending on age at inclusion: Alberta Infant Motor Scale if inclusion at diagnosis Percentile, highest is the best
Time frame: Inclusion
Neurocognitive status: Bayley Scales of Development III
Neurocognitive test panel depending on age at inclusion: Bayley Scales of Development III if inclusion up to 2.5 years: From 0-200, highest is best
Time frame: Inclusion
Neurocognitive status: WIPPSI
Neurocognitive test panel depending on age at inclusion: WIPPSI if inclusion between 2.5-6 years: Wechsler Preschool and Primary Scale of Intelligence, from 41 to 160, highest is best
Time frame: Inclusion
Neurocognitive status: ABC Movement
Neurocognitive test panel depending on age at inclusion: ABC Movement if inclusion between 2.5-16 years Movement Assessment Battery for Children, mean 10 SD 3, highest is best
Time frame: Inclusion
Neurocognitive status: WISC-IV
Neurocognitive test panel depending on age at inclusion: WISC-IV if inclusion between 6-16 years Wechsler Intelligence Scale for Children, 40 to 160, highest is best
Time frame: Inclusion
Neurocognitive status: Auditory Verbal Learning Test/ToMaL
Neurocognitive test panel depending on age at inclusion: Auditory Verbal Learning Test/ToMaL if inclusion between 6-18 years Mean 10 SD 3, highest is best
Time frame: Inclusion
Neurocognitive status: TEA-Ch
Neurocognitive test panel depending on age at inclusion: TEA-Ch if inclusion between 6-18 years Test of Everyday Attention for Children, normalized to z-score, highest is best
Time frame: Inclusion
Neurocognitive status: BADS-C
Neurocognitive test panel depending on age at inclusion: BADS-C if inclusion between 6-18 years Behavioural Assessment of the Dysexecutive Syndrome in Children, 0-24, mean 10 SD 3, highest is best
Time frame: Inclusion
Neurocognitive status: Test of Visual Perceptual Skills
Neurocognitive test panel depending on age at inclusion: Test of Visual Perceptual Skills if inclusion between 6-18 years Percentile, highest is best
Time frame: Inclusion
Neurocognitive status: CANTAB
Neurocognitive test panel depending on age at inclusion: CANTAB if inclusion between 6-18 years Cambridge Neuropsychological Test Automated Battery
Time frame: Inclusion
Neurocognitive status: The Beery Visuo-Motor Integration test
Neurocognitive test panel depending on age at inclusion: The Beery Visuo-Motor Integration test if inclusion between 6-18 years Mean of 100 and standard deviation of 15, highest is best
Time frame: Inclusion
Neurocognitive status: WAIS IV
Neurocognitive test panel depending on age at inclusion: WAIS IV if inclusion from 16 to 18 years Wechsler Adult Intelligence Scale, 40-160, highest is best
Time frame: Inclusion
Neurocognitive status: Kiddie-sads
Neurocognitive test panel depending on age at inclusion: Kiddie-sads if included between 2-18 years Kiddie Schedule for Affective Disorders and Schizophrenia, 0-61, lowest is best
Time frame: Inclusion
Neurocognitive status: BRIEF 1
Neurocognitive test panel depending on age at inclusion: BRIEF 1 if inclusion up to 6 years Behaviour Rating Inventory of Executive Function, percentile, lowest is best
Time frame: Inclusion
Neurocognitive status: BRIEF 2
Neurocognitive test panel depending on age at inclusion: BRIEF 2 if inclusion between 6-18 years Behaviour Rating Inventory of Executive Function, percentile, lowest is best
Time frame: Inclusion
Neurocognitive status: CBCL
Neurocognitive test panel depending on age at inclusion: CBCL if included between 2-18 years Child Behavior Checklist, percentile, lowest is best
Time frame: Inclusion
Neurocognitive status: ADHD screening
Neurocognitive test panel depending on age at inclusion: ADHD screening if included between 2-18 years Lowest is best, 0-78
Time frame: Inclusion
Neurocognitive status: SRS-2
Neurocognitive test panel depending on age at inclusion: SRS-2 screening if included between 6-18 years Social Responsiveness Scale, 32-114. lowest is best
Time frame: Inclusion
Neurocognitive status: Vineland
Neurocognitive test panel depending on age at inclusion: Vineland screening if included between 6-18 years Vineland Adaptive Behavior Scales, 20 to 160, highest is best
Time frame: Inclusion
MRI of the brain
% of patients with anatomic anomalies on MRI of the brain
Time frame: 1 year
Neurocognitive status: Alberta Infant Motor Scale
Alberta Infant Motor Scale Percentile, highest is the best
Time frame: 1 year
Neurocognitive status: Bayley Scales of Development III
Bayley Scales of Development III From 0-200, highest is best
Time frame: 1 year
Neurocognitive status: BRIEF 1
BRIEF 1 Behaviour Rating Inventory of Executive Function, percentile, lowest is best
Time frame: 1 year
Neurocognitive status: CBCL
CBCL Child Behavior Checklist, percentile, lowest is best
Time frame: 1 year
Neurocognitive status: Kiddie-Sads
Kiddie-Sads Kiddie Schedule for Affective Disorders and Schizophrenia, 0-61, lowest is best
Time frame: 1 year
MRI of the brain
% of patients with anatomic anomalies on MRI of the brain
Time frame: 2 years
Neurocognitive status: Bayley Scales of Development III
Bayley Scales of Development III From 0-200, highest is best
Time frame: 2 years
Neurocognitive status: BRIEF 1
BRIEF 1 Behaviour Rating Inventory of Executive Function, percentile, lowest is best
Time frame: 2 years
Neurocognitive status: CBCL
CBCL Child Behavior Checklist, percentile, lowest is best
Time frame: 2 years
Neurocognitive status: Kiddie-Sads
Kiddie-Sads Kiddie Schedule for Affective Disorders and Schizophrenia, 0-61, lowest is best
Time frame: 2 years
Neurocognitive status: ADHD
ADHD Lowest is best, 0-78
Time frame: 2 years
Neurocognitive status: Vineland
Vineland Adaptive Behavior Scales, 20 to 160, highest is best
Time frame: 2 years
MRI of the brain
% of patients with anatomic anomalies on MRI of the brain
Time frame: 6 years
Neurocognitive: Movement ABC
Neurocognitive test panel depending on age Movement Assessment Battery for Children, mean 10 SD 3, highest is best
Time frame: 6 years
Neurocognitive status: WISC-IV
WISC-IV Wechsler Intelligence Scale for Children, 40 to 160, highest is best
Time frame: 6 years
Neurocognitive status: Auditory Verbal Learning Test/ToMaL
Auditory Verbal Learning Test/ToMaL Mean 10 SD 3, highest is best
Time frame: 6 years
Neurocognitive status: TEA-Ch
TEA-Ch Test of Everyday Attention for Children, normalized to z-score, highest is best
Time frame: 6 years
Neurocognitive status: BADS-C
BADS-C Behavioural Assessment of the Dysexecutive Syndrome in Children, 0-24, mean 10 SD 3, highest is best
Time frame: 6 years
Neurocognitive status: Test of Visual Perceptual Skills
Test of Visual Perceptual Skills Percentile, highest is best
Time frame: 6 years
Neurocognitive status: The Beery Visuo-Motor Integration test
The Beery Visuo-Motor Integration test Mean of 100 and standard deviation of 15, highest is best
Time frame: 6 years
Neurocognitive status: CANTAB
CANTAB Cambridge Neuropsychological Test Automated Battery
Time frame: 6 years
Neurocognitive status: BRIEF 2
BRIEF 2 Behaviour Rating Inventory of Executive Function, percentile, lowest is best
Time frame: 6 years
Neurocognitive status: ADHD screening
ADHD screening Lowest is best, 0-78
Time frame: 6 years
Neurocognitive status: SRS-2
SRS-2 Social Responsiveness Scale, 32-114. lowest is best
Time frame: 6 years
Neurocognitive status: Kiddie-Sads
Kiddie-Sads Kiddie Schedule for Affective Disorders and Schizophrenia, 0-61, lowest is best
Time frame: 6 years
Neurocognitive status: CBCL
CBCL Child Behavior Checklist, percentile, lowest is best
Time frame: 6 years
Neurocognitive status: Vineland
Vineland Vineland Adaptive Behavior Scales, 20 to 160, highest is best
Time frame: 6 years
MRI of the brain
% of patients with anatomic anomalies on MRI of the brain
Time frame: 11 years
Neurocognitive status: Movement ABC
Neurocognitive test panel depending on age at inclusion: ABC Movement if inclusion between 2.5-16 years Movement Assessment Battery for Children, mean 10 SD 3, highest is best
Time frame: 11 years
Neurocognitive status: WISC-IV
WISC-IV Wechsler Intelligence Scale for Children, 40 to 160, highest is best
Time frame: 11 years
Neurocognitive status: Auditory Verbal Learning Test/ToMaL
Auditory Verbal Learning Test/ToMaL Mean 10 SD 3, highest is best
Time frame: 11 years
Neurocognitive status:TEA-Ch
TEA-Ch Test of Everyday Attention for Children, normalized to z-score, highest is best
Time frame: 11 years
Neurocognitive status: BADS-C
BADS-C Behavioural Assessment of the Dysexecutive Syndrome in Children, 0-24, mean 10 SD 3, highest is best
Time frame: 11 years
Neurocognitive status: Test of Visual Perceptual Skills
Test of Visual Perceptual Skills Percentile, highest is best
Time frame: 11 years
Neurocognitive status: The Beery Visuo-Motor Integration test
The Beery Visuo-Motor Integration test Mean of 100 and standard deviation of 15, highest is best
Time frame: 11 years
Neurocognitive status: CANTAB
CANTAB Cambridge Neuropsychological Test Automated Battery
Time frame: 11 years
Neurocognitive status: BRIEF 2
BRIEF 2 Behaviour Rating Inventory of Executive Function, percentile, lowest is best
Time frame: 11 years
Neurocognitive status: ADHD screening
ADHD screening Lowest is best, 0-78
Time frame: 11 years
Neurocognitive status: SRS-2
SRS-2 Social Responsiveness Scale, 32-114. lowest is best
Time frame: 11 years
Neurocognitive status: Kiddie-Sads
Kiddie-Sads Kiddie Schedule for Affective Disorders and Schizophrenia, 0-61, lowest is best
Time frame: 11 years
Neurocognitive status: CBCL
CBCL Child Behavior Checklist, percentile, lowest is best
Time frame: 11 years
Neurocognitive status: Vineland
Vineland Adaptive Behavior Scales, 20 to 160, highest is best
Time frame: 11 years
MRI of the brain
% of patients with anatomic anomalies on MRI of the brain
Time frame: 16 years
Neurocognitive status: Movement ABC
Neurocognitive test panel depending on age at inclusion: ABC Movement if inclusion between 2.5-16 years Movement Assessment Battery for Children, mean 10 SD 3, highest is best
Time frame: 16 years
Neurocognitive status: WISC-IV
WISC-IV Wechsler Adult Intelligence Scale, 40-160, highest is best
Time frame: 16 years
Neurocognitive status: Auditory Verbal Learning Test/ToMaL
Auditory Verbal Learning Test/ToMaL Mean 10 SD 3, highest is best
Time frame: 16 years
Neurocognitive status: TEA-Ch
TEA-Ch Test of Everyday Attention for Children, normalized to z-score, highest is best
Time frame: 16 years
Neurocognitive status: BADS-C
BADS-C Behavioural Assessment of the Dysexecutive Syndrome in Children, 0-24, mean 10 SD 3, highest is best
Time frame: 16 years
Neurocognitive status: Test of Visual Perceptual Skills
Test of Visual Perceptual Skills Percentile, highest is best
Time frame: 16 years
Neurocognitive status: The Beery Visuo-Motor Integration test
The Beery Visuo-Motor Integration test Mean of 100 and standard deviation of 15, highest is best
Time frame: 16 years
Neurocognitive status: CANTAB
CANTAB Cambridge Neuropsychological Test Automated Battery
Time frame: 16 years
Neurocognitive status: BRIEF 2
BRIEF 2 Behaviour Rating Inventory of Executive Function, percentile, lowest is best
Time frame: 16 years
Neurocognitive status: ADHD screening
ADHD screening Lowest is best, 0-78
Time frame: 16 years
Neurocognitive status: SRS-2
SRS-2 Social Responsiveness Scale, 32-114. lowest is best
Time frame: 16 years
Neurocognitive status: Kiddie-Sads
Kiddie-Sads Kiddie Schedule for Affective Disorders and Schizophrenia, 0-61, lowest is best
Time frame: 16 years
Neurocognitive status: CBCL
CBCL Child Behavior Checklist, percentile, lowest is best
Time frame: 16 years
Neurocognitive status: Vineland
Vineland Adaptive Behavior Scales, 20 to 160, highest is best
Time frame: 16 years
Genetics: Whole genome sequencing of blood
Whole genome sequencing of blood
Time frame: Inclusion
Genetics: Whole genome sequencing of liver biopsy
Whole genome sequencing of liver biopsy
Time frame: Inclusion
Microbiome: Urine proteomics
Microbiome measurements on urine
Time frame: Inclusion
Microbiome: Feces proteomics
Microbiome measurements on feces
Time frame: Inclusion
Microbiome: Saliva proteomics
Microbiome measurements on saliva
Time frame: Inclusion
Microbiome: Feces Next Generation Sequencing of microbial DNA
Microbiome measurement on feces
Time frame: Inclusion
Microbiome: Urine Next Generation Sequencing of microbial DNA
Microbiome measurement on urine
Time frame: Inclusion
Microbiome: Saliva Next Generation Sequencing of microbial DNA
Microbiome measurement on saliva
Time frame: Inclusion
Microbiome: Feces metabolomics
Microbiome measurements on feces
Time frame: Inclusion
Microbiome: Urine metabolomics
Microbiome measurements on urine
Time frame: Inclusion
This platform is for informational purposes only and does not constitute medical advice. Always consult a qualified healthcare professional.
Microbiome: Saliva metabolomics
Microbiome measurements on saliva
Time frame: Inclusion
Microbiome: Feces metatranscriptomics
Microbiome measurements on feces
Time frame: Inclusion
Microbiome: Urine metatranscriptomics
Microbiome measurements on urine
Time frame: Inclusion
Microbiome: Saliva metatranscriptomics
Microbiome measurements on saliva
Time frame: Inclusion
Genetics: Whole genome sequencing of blood
Whole genome sequencing of blood
Time frame: 1 year
Genetics: Whole genome sequencing of liver biopsy
Whole genome sequencing of liver biopsy
Time frame: 1 year
Microbiome: Feces metatranscriptomics
Microbiome measurements on feces
Time frame: 1 year
Microbiome: Urine metatranscriptomics
Microbiome measurements on urine
Time frame: 1 year
Microbiome: Saliva metatranscriptomics
Microbiome measurements on saliva
Time frame: 1 year
Microbiome: Urine Next Generation Sequencing of microbial DNA
Microbiome measurements on urine
Time frame: 1 year
Microbiome: Feces Next Generation Sequencing of microbial DNA
Microbiome measurements on feces
Time frame: 1 year
Microbiome: Saliva Next Generation Sequencing of microbial DNA
Microbiome measurements on saliva
Time frame: 1 year
Microbiome: Saliva metabolomics
Microbiome measurements on saliva
Time frame: 1 year
Microbiome: Urine metabolomics
Microbiome measurements on urine
Time frame: 1 year
Microbiome: Feces metabolomics
Microbiome measurements on feces
Time frame: 1 year
Microbiome: Saliva proteomics
Microbiome measurements on saliva
Time frame: 1 year
Microbiome: Urine proteomics
Microbiome measurements on urine
Time frame: 1 year
Microbiome: Feces proteomics
Microbiome measurements on feces
Time frame: 1 year
Genetics: Whole genome sequencing of blood
Whole genome sequencing of blood
Time frame: 2 years
Genetics: Whole genome sequencing of liver biopsy
Whole genome sequencing of liver biopsy
Time frame: 2 years
Microbiome: Feces metatranscriptomics
Microbiome measurements on feces
Time frame: 2 years
Microbiome: Urine metatranscriptomics
Microbiome measurements on urine
Time frame: 2 years
Microbiome: Saliva metatranscriptomics
Microbiome measurements on saliva
Time frame: 2 years
Microbiome: Saliva metabolomics
Microbiome measurements on saliva
Time frame: 2 years
Microbiome: Feces metabolomics
Microbiome measurements on feces
Time frame: 2 years
Microbiome: Urine metabolomics
Microbiome measurements on urine
Time frame: 2 years
Microbiome: Urine proteomics
Microbiome measurements on urine
Time frame: 2 years
Microbiome: Feces proteomics
Microbiome measurements on feces
Time frame: 2 years
Microbiome: Saliva proteomics
Microbiome measurements on saliva
Time frame: 2 years
Microbiome: Urine Next Generation Sequencing of microbial DNA
Microbiome measurements on urine
Time frame: 2 years
Microbiome: Saliva Next Generation Sequencing of microbial DNA
Microbiome measurements on saliva
Time frame: 2 years
Microbiome: Feces Next Generation Sequencing of microbial DNA
Microbiome measurements on feces
Time frame: 2 years
Genetics: Whole genome sequencing of blood
Whole genome sequencing of blood
Time frame: 6 years
Genetics: Whole genome sequencing of liver biopsy
Whole genome sequencing of liver biopsy
Time frame: 6 years
Microbiome: Feces Next Generation Sequencing of microbial DNA
Microbiome measurements on feces
Time frame: 6 years
Microbiome: Feces metatranscriptomics
Microbiome measurements on feces
Time frame: 6 years
Microbiome: Feces metabolomics
Microbiome measurements on feces
Time frame: 6 years
Microbiome: Feces proteomics
Microbiome measurements on feces
Time frame: 6 years
Microbiome: Urine Next Generation Sequencing of microbial DNA
Microbiome measurements on urine
Time frame: 6 years
Microbiome: Urine metatranscriptomics
Microbiome measurements on urine
Time frame: 6 years
Microbiome: Urine metabolomics
Microbiome measurements on urine
Time frame: 6 years
Microbiome: Urine proteomics
Microbiome measurements on urine
Time frame: 6 years
Microbiome: Saliva Next Generation Sequencing of microbial DNA
Microbiome measurements on saliva
Time frame: 6 years
Microbiome: Saliva metatranscriptomics
Microbiome measurements on saliva
Time frame: 6 years
Microbiome: Saliva metabolomics
Microbiome measurements on saliva
Time frame: 6 years
Microbiome: Saliva proteomics
Microbiome measurements on saliva
Time frame: 6 years
Genetics: Whole genome sequencing of blood
Whole genome sequencing of blood
Time frame: 11 years
Genetics: Whole genome sequencing of liver biopsy
Whole genome sequencing of liver biopsy
Time frame: 11 years
Microbiome: Feces Next Generation Sequencing of microbial DNA
Microbiome measurements on feces
Time frame: 11 years
Microbiome: Feces metatranscriptomics
Microbiome measurements on feces
Time frame: 11 years
Microbiome: Feces metabolomics
Microbiome measurements on feces
Time frame: 11 years
Microbiome: Feces proteomics
Microbiome measurements on feces
Time frame: 11 years
Microbiome: Urine Next Generation Sequencing of microbial DNA
Microbiome measurements on urine
Time frame: 11 years
Microbiome: Urine metatranscriptomics
Microbiome measurements on urine
Time frame: 11 years
Microbiome: Urine metabolomics
Microbiome measurements on urine
Time frame: 11 years
Microbiome: Urine proteomics
Microbiome measurements on urine
Time frame: 11 years
Microbiome: Saliva Next Generation Sequencing of microbial DNA
Microbiome measurements on saliva
Time frame: 11 years
Microbiome: Saliva metatranscriptomics
Microbiome measurements on saliva
Time frame: 11 years
Microbiome: Saliva metabolomics
Microbiome measurements on saliva
Time frame: 11 years
Microbiome: Saliva proteomics
Microbiome measurements on saliva
Time frame: 11 years
Genetics: Whole genome sequencing of blood
Whole genome sequencing of blood
Time frame: 16 years
Genetics: Whole genome sequencing of liver biopsy
Whole genome sequencing of liver biopsy
Time frame: 16 years
Microbiome: Feces metatranscriptomics
Microbiome measurements on feces
Time frame: 16 years
Microbiome: Feces Next Generation Sequencing of microbial DNA
Microbiome measurements on feces
Time frame: 16 years
Microbiome: Feces metabolomics
Microbiome measurements on feces
Time frame: 16 years
Microbiome: Feces proteomics
Microbiome measurements on feces
Time frame: 16 years
Microbiome: Urine metatranscriptomics
Microbiome measurements on urine
Time frame: 16 years
Microbiome: Urine Next Generation Sequencing of microbial DNA
Microbiome measurements on urine
Time frame: 16 years
Microbiome: Urine metabolomics
Microbiome measurements on urine
Time frame: 16 years
Microbiome: Urine proteomics
Microbiome measurements on urine
Time frame: 16 years
Microbiome: Saliva metatranscriptomics
Microbiome measurements on saliva
Time frame: 16 years
Microbiome: Saliva Next Generation Sequencing of microbial DNA
Microbiome measurements on saliva
Time frame: 16 years
Microbiome: Saliva metabolomics
Microbiome measurements on saliva
Time frame: 16 years
Microbiome: Saliva proteomics
Microbiome measurements on saliva
Time frame: 16 years
Status of the cardiac system: Ultrasound of the heart
% of patients with anatomic anomalies on ultrasound of the heart
Time frame: Inclusion
Status of the cardiac system: MRI of the lymph system
% of patients with central lymph system anomaly
Time frame: Inclusion
Status of the cardiac system: Near Infrared Fluorescence of the lymph system
Near Infrared Fluorescence of the lymph system
Time frame: Inclusion
Status of the cardiac system: Ultrasound of the heart
% of patients with anatomic anomalies on ultrasound of the heart
Time frame: 1 year
Status of the cardiac system: MRI of the lymph system
% of patients with central lymph system anomaly
Time frame: 1 year
Status of the cardiac system: Near Infrared Fluorescence of the lymph system
Near Infrared Fluorescence of the lymph system
Time frame: 1 year
Status of the cardiac system: Ultrasound of the heart
% of patients with anatomic anomalies on ultrasound of the heart
Time frame: 2 years
Status of the cardiac system: MRI of the lymph system
% of patients with central lymph system anomaly
Time frame: 2 years
Status of the cardiac system: Near Infrared Fluorescence of the lymph system
Near Infrared Fluorescence of the lymph system
Time frame: 2 years
Status of the cardiac system: Ultrasound of the heart
% of patients with anatomic anomalies on ultrasound of the heart
Time frame: 6 years
Status of the cardiac system: MRI of the lymph system
% of patients with central lymph system anomaly
Time frame: 6 years
Status of the cardiac system: Near Infrared Fluorescence of the lymph system
Near Infrared Fluorescence of the lymph system
Time frame: 6 years
Status of the cardiac system: Ultrasound of the heart
% of patients with anatomic anomalies on ultrasound of the heart
Time frame: 11 years
Status of the cardiac system: MRI of the lymph system
% of patients with central lymph system anomaly
Time frame: 11 years
Status of the cardiac system: Near Infrared Fluorescence of the lymph system
Near Infrared Fluorescence of the lymph system
Time frame: 11 years
Status of the cardiac system: Ultrasound of the heart
% of patients with anatomic anomalies on ultrasound of the heart
Time frame: 16 years
Status of the cardiac system: MRI of the lymph system
% of patients with central lymph system anomaly
Time frame: 16 years
Status of the cardiac system: Near Infrared Fluorescence of the lymph system
Near Infrared Fluorescence of the lymph system
Time frame: 16 years
Level of Physical activity
Accelerometer measurements
Time frame: Inclusion
Level of Physical activity
Accelerometer measurements
Time frame: 1 year
Level of Physical activity
Accelerometer measurements
Time frame: 2 years
Level of Physical activity
Accelerometer measurements
Time frame: 6 years
Level of Physical activity
Accelerometer measurements
Time frame: 11 years
Level of Physical activity
Accelerometer measurements
Time frame: 16 years
Ultrasound of liver and bile ducts with elastography
% of patients with liver fibrosis measured with ultrasound
Time frame: Inclusion
Liver biopsy
Level of liver fibrosis (grade 0-4)
Time frame: Inclusion
FGF-19; Fibroblast growth factor 19
Liver fibrosis status
Time frame: Inclusion
ELF-score: Enhanced Liver Fibrosis
Liver fibrosis status
Time frame: Inclusion
INR: international normalized ratio
Standard liver evaluation
Time frame: Inclusion
prothrombin+proconvertin (PP)
Standard liver evaluation
Time frame: Inclusion
ALAT: alanine transaminase
Standard liver evaluation
Time frame: Inclusion
GGT: Gamma-glutamyl transferase
Standard liver evaluation
Time frame: Inclusion
Bilirubin
Standard liver evaluation
Time frame: Inclusion
ASAT: Aspartate transaminase
Standard liver evaluation
Time frame: Inclusion
Alkaline phosphatase
Standard liver evaluation
Time frame: Inclusion
Ammonia
Standard liver evaluation
Time frame: Inclusion
Thrombocytes
Standard liver evaluation
Time frame: Inclusion
Ultrasound of liver and bile ducts with elastography
% of patients with liver fibrosis measured with ultrasound
Time frame: 1 year
FGF-19: Fibroblast growth factor 19
Liver fibrosis status
Time frame: 1 year
ELF-score: Enhanced Liver Fibrosis
Liver fibrosis status
Time frame: 1 year
INR: international normalized ratio
Standard liver evaluation
Time frame: 1 year
prothrombin+proconvertin (PP)
Standard liver evaluation
Time frame: 1 year
ALAT: alanine transaminase
Standard liver evaluation
Time frame: 1 year
ASAT: Aspartate transaminase
Standard liver evaluation
Time frame: 1 year
GGT: Gamma-glutamyl transferase
Standard liver evaluation
Time frame: 1 year
Bilirubin
Standard liver evaluation
Time frame: 1 year
Alkaline phosphatase
Standard liver evaluation
Time frame: 1 year
Ammonia
Standard liver evaluation
Time frame: 1 year
Thrombocytes
Standard liver evaluation
Time frame: 1 year
Liver biopsy
Level of liver fibrosis (grade 0-4)
Time frame: 1 year
Ultrasound of liver and bile ducts with elastography
% of patients with liver fibrosis measured with ultrasound
Time frame: 2 years
FGF-19: Fibroblast growth factor 19
Liver fibrosis status
Time frame: 2 years
ELF-score: Enhanced Liver Fibrosis
Liver fibrosis status
Time frame: 2 years
Liver biopsy
Level of liver fibrosis (grade 0-4)
Time frame: 2 years
INR: international normalized ratio
Standard liver evaluation
Time frame: 2 years
prothrombin+proconvertin (PP)
Standard liver evaluation
Time frame: 2 years
ALAT: alanine transaminase
Standard liver evaluation
Time frame: 2 years
ASAT: Aspartate transaminase
Standard liver evaluation
Time frame: 2 years
GGT: Gamma-glutamyl transferase
Standard liver evaluation
Time frame: 2 years
Alkaline phosphatase
Standard liver evaluation
Time frame: 2 years
Bilirubin
Standard liver evaluation
Time frame: 2 years
Ammonia
Standard liver evaluation
Time frame: 2 years
Thrombocytes
Standard liver evaluation
Time frame: 2 years
Ultrasound of liver and bile ducts with elastography
% of patients with liver fibrosis measured with ultrasound
Time frame: 6 years
Liver biopsy
Level of liver fibrosis (grade 0-4)
Time frame: 6 years
ELF-score: Enhanced Liver Fibrosis
Liver fibrosis status
Time frame: 6 years
FGF-19: Fibroblast growth factor 19
Liver fibrosis status
Time frame: 6 years
INR: international normalized ratio
Standard liver evaluation
Time frame: 6 years
prothrombin+proconvertin (PP)
Standard liver evaluation
Time frame: 6 years
ALAT: alanine transaminase
Standard liver evaluation
Time frame: 6 years
ASAT: Aspartate transaminase
Standard liver evaluation
Time frame: 6 years
GGT: Gamma-glutamyl transferase
Standard liver evaluation
Time frame: 6 years
Bilirubin
Standard liver evaluation
Time frame: 6 years
Alkaline phosphatase
Standard liver evaluation
Time frame: 6 years
Ammonia
Standard liver evaluation
Time frame: 6 years
Thrombocytes
Standard liver evaluation
Time frame: 6 years
Ultrasound of liver and bile ducts with elastography
% of patients with liver fibrosis measured with ultrasound
Time frame: 11 years
Liver biopsy
Level of liver fibrosis (grade 0-4)
Time frame: 11 years
FGF-19: Fibroblast growth factor 19
Liver fibrosis status
Time frame: 11 years
ELF-score: Enhanced Liver Fibrosis
Liver fibrosis status
Time frame: 11 years
INR: international normalized ratio
Standard liver evaluation
Time frame: 11 years
prothrombin+proconvertin (PP)
Standard liver evaluation
Time frame: 11 years
ALAT: alanine transaminase
Standard liver evaluation
Time frame: 11 years
ASAT: Aspartate transaminase
Standard liver evaluation
Time frame: 11 years
GGT: Gamma-glutamyl transferase
Standard liver evaluation
Time frame: 11 years
Bilirubin
Standard liver evaluation
Time frame: 11 years
Alkaline phosphatase
Standard liver evaluation
Time frame: 11 years
Ammonia
Standard liver evaluation
Time frame: 11 years
Thrombocytes
Standard liver evaluation
Time frame: 11 years
Ultrasound of liver and bile ducts with elastography
% of patients with liver fibrosis measured with ultrasound
Time frame: 16 years
Liver biopsy
Level of liver fibrosis (grade 0-4)
Time frame: 16 years
FGF-19: Fibroblast growth factor 19
Liver fibrosis status
Time frame: 16 years
ELF-score: Enhanced Liver Fibrosis
Liver fibrosis status
Time frame: 16 years
INR: international normalized ratio
Standard liver evaluation
Time frame: 16 years
prothrombin+proconvertin (PP)
Standard liver evaluation
Time frame: 16 years
ALAT: alanine transaminase
Standard liver evaluation
Time frame: 16 years
ASAT: Aspartate transaminase
Standard liver evaluation
Time frame: 16 years
GGT: Gamma-glutamyl transferase
Standard liver evaluation
Time frame: 16 years
Bilirubin
Standard liver evaluation
Time frame: 16 years
Alkaline phosphatase
Standard liver evaluation
Time frame: 16 years
Ammonia
Standard liver evaluation
Time frame: 16 years
Thrombocytes
Standard liver evaluation
Time frame: 16 years
Clinical examination: Cirrhosis stigmata
Incidence of spider angioma
Time frame: Inclusion
Clinical examination: Cirrhosis stigmata
Incidence of spider angioma
Time frame: 1 year
Clinical examination: Cirrhosis stigmata
Incidence of spider angioma
Time frame: 2 years
Clinical examination: Cirrhosis stigmata
Incidence of spider angioma
Time frame: 6 years
Clinical examination: Cirrhosis stigmata
Incidence of spider angioma
Time frame: 11 years
Clinical examination: Cirrhosis stigmata
Incidence of spider angioma
Time frame: 16 years
Clinical examination: Cirrhosis stigmata
Incidence of ascitis
Time frame: Inclusion
Clinical examination: Cirrhosis stigmata
Incidence of ascitis
Time frame: 1 year
Clinical examination: Cirrhosis stigmata
Incidence of ascitis
Time frame: 2 years
Clinical examination: Cirrhosis stigmata
Incidence of ascitis
Time frame: 6 years
Clinical examination: Cirrhosis stigmata
Incidence of ascitis
Time frame: 11 years
Clinical examination: Cirrhosis stigmata
Incidence of ascitis
Time frame: 16 years
Clinical examination: Cirrhosis stigmata
Incidence of palmar erythema
Time frame: Inclusion
Clinical examination: Cirrhosis stigmata
Incidence of palmar erythema
Time frame: 1 year
Clinical examination: Cirrhosis stigmata
Incidence of palmar erythema
Time frame: 2 years
Clinical examination: Cirrhosis stigmata
Incidence of palmar erythema
Time frame: 6 years
Clinical examination: Cirrhosis stigmata
Incidence of palmar erythema
Time frame: 11 years
Clinical examination: Cirrhosis stigmata
Incidence of palmar erythema
Time frame: 16 years
Anthropometry: Length
cm
Time frame: Inclusion
Anthropometry: Length
cm
Time frame: 1 year
Anthropometry: Length
cm
Time frame: 2 years
Anthropometry: Height
cm
Time frame: 6 years
Anthropometry: Height
cm
Time frame: 11 years
Anthropometry: Height
cm
Time frame: 16 years
Anthropometry: Weight
kg
Time frame: Inclusion
Anthropometry: Weight
kg
Time frame: 1 year
Anthropometry: Weight
kg
Time frame: 2 years
Anthropometry: Weight
kg
Time frame: 6 years
Anthropometry: Weight
kg
Time frame: 11 years
Anthropometry: Weight
kg
Time frame: 16 years
Anthropometry: Mid-upper arm circumference (MUAC)
mm
Time frame: Inclusion
Anthropometry: Mid-upper arm circumference (MUAC)
mm
Time frame: 1 year
Anthropometry: Mid-upper arm circumference (MUAC)
mm
Time frame: 2 years
Anthropometry: Mid-upper arm circumference (MUAC)
mm
Time frame: 6 years
Anthropometry: Mid-upper arm circumference (MUAC)
mm
Time frame: 11 years
Anthropometry: Mid-upper arm circumference (MUAC)
mm
Time frame: 16 years
Anthropometry: Head circumference
cm
Time frame: Inclusion
Anthropometry: Head circumference
cm
Time frame: 1 year
Anthropometry: Head circumference
cm
Time frame: 2 years
Anthropometry: Head circumference
cm
Time frame: 6 years
Anthropometry: Head circumference
cm
Time frame: 11 years
Anthropometry: Head circumference
cm
Time frame: 16 years
Essential fatty acids
Time frame: Inclusion
Essential fatty acids
Time frame: 1 year
Essential fatty acids
Time frame: 2 years
Essential fatty acids
Time frame: 6 years
Essential fatty acids
Time frame: 11 years
Essential fatty acids
Time frame: 16 years
IGF-1
Insulin-like growth factor 1
Time frame: Inclusion
IGF-1
Insulin-like growth factor 1
Time frame: 1 year
IGF-1
Insulin-like growth factor 1
Time frame: 2 years
IGF-1
Insulin-like growth factor 1
Time frame: 6 years
IGF-1
Insulin-like growth factor 1
Time frame: 11 years
IGF-1
Insulin-like growth factor 1
Time frame: 16 years
Meal stimulation measuring incretin
Time frame: Inclusion
Meal stimulation measuring incretin
Time frame: 1 year
Meal stimulation measuring incretin
Time frame: 2 years
Meal stimulation measuring incretin
Time frame: 6 years
Meal stimulation measuring incretin
Time frame: 11 years
Meal stimulation measuring incretin
Time frame: 16 years
Bile acid
Time frame: Inclusion
Bile acid
Time frame: 1 year
Bile acid
Time frame: 2 years
Bile acid
Time frame: 6 years
Bile acid
Time frame: 11 years
Bile acid
Time frame: 16 years
Autotaxin
Time frame: Inclusion
Autotaxin
Time frame: 1 year
Autotaxin
Time frame: 2 years
Autotaxin
Time frame: 6 years
Autotaxin
Time frame: 11 years
Autotaxin
Time frame: 16 years
EDTA clearance
Glomerular Filtration Rate Measured by 51 Cr-EDTA Clearance
Time frame: Inclusion
EDTA clearance
Glomerular Filtration Rate Measured by 51 Cr-EDTA Clearance
Time frame: 1 year
EDTA clearance
Glomerular Filtration Rate Measured by 51 Cr-EDTA Clearance
Time frame: 2 years
EDTA clearance
Glomerular Filtration Rate Measured by 51 Cr-EDTA Clearance
Time frame: 6 years
EDTA clearance
Glomerular Filtration Rate Measured by 51 Cr-EDTA Clearance
Time frame: 11 years
EDTA clearance
Glomerular Filtration Rate Measured by 51 Cr-EDTA Clearance
Time frame: 16 years
Vaccination status
Level of antibodies
Time frame: Inclusion
Vaccination status
Level of antibodies
Time frame: 1 year
Vaccination status
Level of antibodies
Time frame: 2 years
Vaccination status
Level of antibodies
Time frame: 6 years
Vaccination status
Level of antibodies
Time frame: 11 years
Vaccination status
Level of antibodies
Time frame: 16 years
Immunoresponse: RTE
Recent thymic emigrants
Time frame: Inclusion
Immunoresponse: RTE
Recent thymic emigrants
Time frame: 1 year
Immunoresponse: RTE
Recent thymic emigrants
Time frame: 2 years
Immunoresponse: RTE
Recent thymic emigrants
Time frame: 6 years
Immunoresponse: RTE
Recent thymic emigrants
Time frame: 11 years
Immunoresponse: RTE
Recent thymic emigrants
Time frame: 16 years
Immunoresponse: Flow panel
T-cell differentiation
Time frame: Inclusion
Immunoresponse: Flow panel
T-cell differentiation
Time frame: 1 year
Immunoresponse: Flow panel
T-cell differentiation
Time frame: 2 years
Immunoresponse: Flow panel
T-cell differentiation
Time frame: 6 years
Immunoresponse: Flow panel
T-cell differentiation
Time frame: 11 years
Immunoresponse: Flow panel
T-cell differentiation
Time frame: 16 years
Immunoresponse: Immunoglobulin
Time frame: Inclusion
Immunoresponse: Immunoglobulin
Time frame: 1 year
Immunoresponse: Immunoglobulin
Time frame: 2 years
Immunoresponse: Immunoglobulin
Time frame: 6 years
Immunoresponse: Immunoglobulin
Time frame: 11 years
Immunoresponse: Immunoglobulin
Time frame: 16 years
Immunoresponse: Somatic hyper mutation
Time frame: Inclusion
Immunoresponse: Somatic hyper mutation
Time frame: 1 year
Immunoresponse: Somatic hyper mutation
Time frame: 2 years
Immunoresponse: Somatic hyper mutation
Time frame: 6 years
Immunoresponse: Somatic hyper mutation
Time frame: 11 years
Immunoresponse: Somatic hyper mutation
Time frame: 16 years
Epstein-Barr Virus (EBV)
level of EBV DNA present
Time frame: Inclusion
Epstein-Barr Virus (EBV)
level of EBV DNA present
Time frame: 1 year
Epstein-Barr Virus (EBV)
level of EBV DNA present
Time frame: 2 years
Epstein-Barr Virus (EBV)
level of EBV DNA present
Time frame: 6 years
Epstein-Barr Virus (EBV)
level of EBV DNA present
Time frame: 11 years
Epstein-Barr Virus (EBV)
level of EBV DNA present
Time frame: 16 years
Cytomegalovirus (CMV)
level of CMV DNA present
Time frame: Inclusion
Cytomegalovirus (CMV)
level of CMV DNA present
Time frame: 1 year
Cytomegalovirus (CMV)
level of CMV DNA present
Time frame: 2 years
Cytomegalovirus (CMV)
level of CMV DNA present
Time frame: 6 years
Cytomegalovirus (CMV)
level of CMV DNA present
Time frame: 11 years
Cytomegalovirus (CMV)
level of CMV DNA present
Time frame: 16 years
Hepatobiliary scintigraphy
Hepatic extraction fraction
Time frame: Inclusion
Hepatobiliary scintigraphy
Hepatic extraction fraction
Time frame: 1 year
Hepatobiliary scintigraphy
Hepatic extraction fraction
Time frame: 2 years
Hepatobiliary scintigraphy
Hepatic extraction fraction
Time frame: 6 years
Hepatobiliary scintigraphy
Hepatic extraction fraction
Time frame: 11 years
Hepatobiliary scintigraphy
Hepatic extraction fraction
Time frame: 16 years
MRI of liver and bile ducts with elastography
Liver stiffness
Time frame: Inclusion
MRI of liver and bile ducts with elastography
Liver stiffness
Time frame: 1 year
MRI of liver and bile ducts with elastography
Liver stiffness
Time frame: 2 years
MRI of liver and bile ducts with elastography
Liver stiffness
Time frame: 6 years
MRI of liver and bile ducts with elastography
Liver stiffness
Time frame: 11 years
MRI of liver and bile ducts with elastography
Liver stiffness
Time frame: 16 years
Fibroscan
Liver stiffness (number)
Time frame: Inclusion
Fibroscan
Liver stiffness (number)
Time frame: 1 year
Fibroscan
Liver stiffness (number)
Time frame: 2 years
Fibroscan
Liver stiffness (number)
Time frame: 6 years
Fibroscan
Liver stiffness (number)
Time frame: 11 years
Fibroscan
Liver stiffness (number)
Time frame: 16 years
Indocyanine green clearance
Time frame: Inclusion
Indocyanine green clearance
Time frame: 1 year
Indocyanine green clearance
Time frame: 2 years
Indocyanine green clearance
Time frame: 6 years
Indocyanine green clearance
Time frame: 11 years
Indocyanine green clearance
Time frame: 16 years
Fecal fat measurements
Time frame: Inclusion
Fecal fat measurements
Time frame: 1 year
Fecal fat measurements
Time frame: 2 years
Fecal fat measurements
Time frame: 6 years
Fecal fat measurements
Time frame: 11 years
Fecal fat measurements
Time frame: 16 years
Thymus scan with ultrasound
Thymic index (measurement of size)
Time frame: Inclusion
Thymus scan with ultrasound
Thymic index (measurement of size)
Time frame: 1 year
Thymus scan with ultrasound
Thymic index (measurement of size)
Time frame: 2 years
Thymus scan with ultrasound
Thymic index (measurement of size)
Time frame: 6 years
Thymus scan with ultrasound
Thymic index (measurement of size)
Time frame: 11 years
Thymus scan with ultrasound
Thymic index (measurement of size)
Time frame: 16 years
DEXA scan
Dual energy x-ray absorptiometry
Time frame: Inclusion
DEXA scan
Dual energy x-ray absorptiometry
Time frame: 1 year
DEXA scan
Dual energy x-ray absorptiometry
Time frame: 2 years
DEXA scan
Dual energy x-ray absorptiometry
Time frame: 6 years
DEXA scan
Dual energy x-ray absorptiometry
Time frame: 11 years
DEXA scan
Dual energy x-ray absorptiometry
Time frame: 16 years
PEDS-QL
Pediatric Quality of Life Inventory Higher scores indicate better quality of life, from 0-100
Time frame: Inclusion
PEDS-QL
Pediatric Quality of Life Inventory Higher scores indicate better quality of life, from 0-100
Time frame: 1 year
PEDS-QL
Pediatric Quality of Life Inventory Higher scores indicate better quality of life, from 0-100
Time frame: 2 years
PEDS-QL
Pediatric Quality of Life Inventory Higher scores indicate better quality of life, from 0-100
Time frame: 6 years
PEDS-QL
Pediatric Quality of Life Inventory Higher scores indicate better quality of life, from 0-100
Time frame: 11 years
PEDS-QL
Pediatric Quality of Life Inventory Higher scores indicate better quality of life, from 0-100
Time frame: 16 years
Leptin
Time frame: Inclusion
Leptin
Time frame: 1 year
Leptin
Time frame: 2 years
Leptin
Time frame: 6 years
Leptin
Time frame: 11 years
Leptin
Time frame: 16 years