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ERKNet Cystinuria registry: Visits

23 forms  
Biochemistry
Description

Biochemistry

Alias
UMLS CUI [1,1]
C0005477
24h urinary samples: Urinary volume in ml
Description

I.cyst_urinary_vol_24h

Data type

integer

Alias
UMLS CUI [1,1]
C0427843
UMLS CUI [1,2]
C0439242
24h urinary samples: Creatininuria (0 - 5000 mg/24h)
Description

I.cyst_creatinuria_24h

Data type

float

Alias
UMLS CUI [1,1]
C1255149
UMLS CUI [1,2]
C1318439
24h urinary samples: Cystinuria (0.12 - 10 g/24h)
Description

I.cyst_cystine_24h

Data type

float

Alias
UMLS CUI [1,1]
C1255149
UMLS CUI [1,2]
C0546634
24h urinary samples: Natriuresis (5 - 700 mmol/24h)
Description

I.cyst_natriuresis_24h

Data type

float

Alias
UMLS CUI [1,1]
C1255149
UMLS CUI [1,2]
C0027477
24h urinary samples: Kaliuresis (4 - 1000 mmol/24h)
Description

I.cyst_kaliuresis_24h

Data type

float

Alias
UMLS CUI [1,1]
C1255149
UMLS CUI [1,2]
C0920110
24h urinary samples: Urea (25 - 2000 mmol/24h)
Description

I.cyst_urea_24h

Data type

float

Alias
UMLS CUI [1,1]
C1255149
UMLS CUI [1,2]
C0523961
Urinary spot samples: Proteinuria (0 - 50 g/L)
Description

I.cyst_proteinuria_spot

Data type

float

Alias
UMLS CUI [1,1]
C1272574
UMLS CUI [1,2]
C0033687
Urinary spot samples: Cystine crystals
Description

I.cyst_cystine_crystals_spot

Data type

text

Alias
UMLS CUI [1,1]
C1272574
UMLS CUI [1,2]
C2699539
UMLS CUI [1,3]
C1512698
If yes, volume of cystine crystals (0 - 10000 micro3/mm3)?
Description

I.cyst_cystine_crystals_volume_spot

Data type

float

Alias
UMLS CUI [1,1]
C2699539
UMLS CUI [1,2]
C2700258
UMLS CUI [1,3]
C1274040
Urinary spot samples: Phosphate amorphus calcium carbonate
Description

I.cyst_phosphate_amorphus_calcium_spot

Data type

text

Alias
UMLS CUI [1,1]
C0006681
UMLS CUI [1,2]
C2267031
UMLS CUI [1,3]
C1272574
Urinary spot samples: If the urine pH is measured, which method was used?
Description

I.cyst_urine_pH_method_spot

Data type

text

Alias
UMLS CUI [1,1]
C0042044
UMLS CUI [1,2]
C2911685
UMLS CUI [1,3]
C1272574
Urinary spot samples: Urine specific gravity (0.6 - 2)
Description

I.cyst_urea_specific_spot

Data type

float

Alias
UMLS CUI [1,1]
C1272574
UMLS CUI [1,2]
C0202517
Urinary spot samples: Creatininuria (0.001 - 1000 mmol/L)
Description

I.cyst_creatinuria_spot

Data type

float

Alias
UMLS CUI [1,1]
C1318439
UMLS CUI [1,2]
C1272574
Urinary spot samples: Cystinuria (0 - 2000 micromol/mmol)
Description

I.cyst_cystinuria_spot

Data type

float

Alias
UMLS CUI [1,1]
C1272574
UMLS CUI [1,2]
C0010691
Urinary spot samples: Cystine capacity (0 - 1)
Description

I.cyst_cystine_cap_spot

Data type

float

Alias
UMLS CUI [1,1]
C0010682
UMLS CUI [1,2]
C1516240
UMLS CUI [1,3]
C1272574
Spontaneous stone passage
Description

I.cyst_calculi_spontaneous_stone_passage

Data type

text

Alias
UMLS CUI [1,1]
C5906745
Date of the spontaneous stone passage
Description

I.cyst_calculi_spontaneous_stone_date

Data type

date

Alias
UMLS CUI [1,1]
C0011008
UMLS CUI [1,2]
C5906745
Number of calculis
Description

I.cyst_spontaneous_stone_numbers

Data type

integer

Alias
UMLS CUI [1,1]
C0022650
UMLS CUI [1,2]
C1265611
Radiology (inclusion/follow-up)
Description

I.cyst_calculi_radiology

Data type

text

Alias
UMLS CUI [1,1]
C1522577
UMLS CUI [1,2]
C1512693
UMLS CUI [1,3]
C1522449
Date of the radiology
Description

I.cyst_calculi_radiology_date

Data type

date

Alias
UMLS CUI [1,1]
C0011008
UMLS CUI [1,2]
C1522449
Method used for the radiology
Description

I.cyst_calculi_radiology_method

Data type

text

Alias
UMLS CUI [1,1]
C1275506
Number of new stones with a diameter larger or equal to 5mm
Description

I.cyst_calculi_radiology_new_stones

Data type

integer

Alias
UMLS CUI [1,1]
C0205314
UMLS CUI [1,2]
C0022650
UMLS CUI [1,3]
C1265611
UMLS CUI [1,4]
C0549177
Quality and Performance indicators
Description

Quality and Performance indicators

Alias
UMLS CUI [1,1]
C1518965
Stone Analysis (did the patient develop new stones in the past 12 months?)
Description

I.cyst_stone_analysis

Data type

text

Alias
UMLS CUI [1,1]
C0022650
UMLS CUI [1,2]
C0936012
Self-monitoring: Urine specific gravity
Description

I.cyst_self_monitoring_urine_spec_gravity

Data type

text

Alias
UMLS CUI [1,1]
C0202517
UMLS CUI [1,2]
C0588436
Self-monitoring: Urine colour chart
Description

I.cyst_self_monitoring_urine_colour_chart

Data type

text

Alias
UMLS CUI [1,1]
C0588436
UMLS CUI [1,2]
C0278030
Self-monitoring: Urine pH
Description

I.cyst_self_monitoring_urine_pH

Data type

text

Alias
UMLS CUI [1,1]
C0588436
UMLS CUI [1,2]
C0042044
If yes, which method was used?
Description

I.cyst_self_monitoring_urine_pH_method

Data type

text

Alias
UMLS CUI [1,1]
C0042044
UMLS CUI [1,2]
C2911685
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Similar models

ERKNet Cystinuria registry: Visits

23 forms
Name
Type
Description | Question | Decode (Coded Value)
Data type
Alias
Item Group
Biochemistry
C0005477 (UMLS CUI [1,1])
I.cyst_urinary_vol_24h
Item
24h urinary samples: Urinary volume in ml
integer
C0427843 (UMLS CUI [1,1])
C0439242 (UMLS CUI [1,2])
I.cyst_creatinuria_24h
Item
24h urinary samples: Creatininuria (0 - 5000 mg/24h)
float
C1255149 (UMLS CUI [1,1])
C1318439 (UMLS CUI [1,2])
I.cyst_cystine_24h
Item
24h urinary samples: Cystinuria (0.12 - 10 g/24h)
float
C1255149 (UMLS CUI [1,1])
C0546634 (UMLS CUI [1,2])
I.cyst_natriuresis_24h
Item
24h urinary samples: Natriuresis (5 - 700 mmol/24h)
float
C1255149 (UMLS CUI [1,1])
C0027477 (UMLS CUI [1,2])
I.cyst_kaliuresis_24h
Item
24h urinary samples: Kaliuresis (4 - 1000 mmol/24h)
float
C1255149 (UMLS CUI [1,1])
C0920110 (UMLS CUI [1,2])
I.cyst_urea_24h
Item
24h urinary samples: Urea (25 - 2000 mmol/24h)
float
C1255149 (UMLS CUI [1,1])
C0523961 (UMLS CUI [1,2])
I.cyst_proteinuria_spot
Item
Urinary spot samples: Proteinuria (0 - 50 g/L)
float
C1272574 (UMLS CUI [1,1])
C0033687 (UMLS CUI [1,2])
Item
Urinary spot samples: Cystine crystals
text
C1272574 (UMLS CUI [1,1])
C2699539 (UMLS CUI [1,2])
C1512698 (UMLS CUI [1,3])
CL.2
Code List
Urinary spot samples: Cystine crystals
CL Item
No (0)
C1298908 (UMLS CUI [1,1])
CL Item
Yes (1)
C5399964 (UMLS CUI [1,1])
I.cyst_cystine_crystals_volume_spot
Item
If yes, volume of cystine crystals (0 - 10000 micro3/mm3)?
float
C2699539 (UMLS CUI [1,1])
C2700258 (UMLS CUI [1,2])
C1274040 (UMLS CUI [1,3])
Item
Urinary spot samples: Phosphate amorphus calcium carbonate
text
C0006681 (UMLS CUI [1,1])
C2267031 (UMLS CUI [1,2])
C1272574 (UMLS CUI [1,3])
CL.2
Code List
Urinary spot samples: Phosphate amorphus calcium carbonate
CL Item
No (0)
C1298908 (UMLS CUI [1,1])
CL Item
Yes (1)
C5399964 (UMLS CUI [1,1])
Item
Urinary spot samples: If the urine pH is measured, which method was used?
text
C0042044 (UMLS CUI [1,1])
C2911685 (UMLS CUI [1,2])
C1272574 (UMLS CUI [1,3])
CL.116
Code List
Urinary spot samples: If the urine pH is measured, which method was used?
CL Item
pHmeter (0)
C5447264 (UMLS CUI [1,1])
CL Item
pH paper (1)
C0042044 (UMLS CUI [1,1])
C1170938 (UMLS CUI [1,2])
CL Item
Dipstick (2)
C0430370 (UMLS CUI [1,1])
CL Item
Unknown (3)
C0439673 (UMLS CUI [1,1])
I.cyst_urea_specific_spot
Item
Urinary spot samples: Urine specific gravity (0.6 - 2)
float
C1272574 (UMLS CUI [1,1])
C0202517 (UMLS CUI [1,2])
I.cyst_creatinuria_spot
Item
Urinary spot samples: Creatininuria (0.001 - 1000 mmol/L)
float
C1318439 (UMLS CUI [1,1])
C1272574 (UMLS CUI [1,2])
I.cyst_cystinuria_spot
Item
Urinary spot samples: Cystinuria (0 - 2000 micromol/mmol)
float
C1272574 (UMLS CUI [1,1])
C0010691 (UMLS CUI [1,2])
I.cyst_cystine_cap_spot
Item
Urinary spot samples: Cystine capacity (0 - 1)
float
C0010682 (UMLS CUI [1,1])
C1516240 (UMLS CUI [1,2])
C1272574 (UMLS CUI [1,3])
Item
Spontaneous stone passage
text
C5906745 (UMLS CUI [1,1])
CL.34
Code List
Spontaneous stone passage
CL Item
No (0)
C1298908 (UMLS CUI [1,1])
CL Item
Yes (1)
C1705108 (UMLS CUI [1,1])
CL Item
Unknown (9)
C0439673 (UMLS CUI [1,1])
I.cyst_calculi_spontaneous_stone_date
Item
Date of the spontaneous stone passage
date
C0011008 (UMLS CUI [1,1])
C5906745 (UMLS CUI [1,2])
I.cyst_spontaneous_stone_numbers
Item
Number of calculis
integer
C0022650 (UMLS CUI [1,1])
C1265611 (UMLS CUI [1,2])
Item
Radiology (inclusion/follow-up)
text
C1522577 (UMLS CUI [1,1])
C1512693 (UMLS CUI [1,2])
C1522449 (UMLS CUI [1,3])
CL.34
Code List
Radiology (inclusion/follow-up)
CL Item
No (0)
C1298908 (UMLS CUI [1,1])
CL Item
Yes (1)
C1705108 (UMLS CUI [1,1])
CL Item
Unknown (9)
C0439673 (UMLS CUI [1,1])
I.cyst_calculi_radiology_date
Item
Date of the radiology
date
C0011008 (UMLS CUI [1,1])
C1522449 (UMLS CUI [1,2])
Item
Method used for the radiology
text
C1275506 (UMLS CUI [1,1])
CL.117
Code List
Method used for the radiology
CL Item
US (0)
C0041618 (UMLS CUI [1,1])
CL Item
CT scan (1)
C0040405 (UMLS CUI [1,1])
CL Item
unknown (9)
C0439673 (UMLS CUI [1,1])
I.cyst_calculi_radiology_new_stones
Item
Number of new stones with a diameter larger or equal to 5mm
integer
C0205314 (UMLS CUI [1,1])
C0022650 (UMLS CUI [1,2])
C1265611 (UMLS CUI [1,3])
C0549177 (UMLS CUI [1,4])
Item Group
Quality and Performance indicators
C1518965 (UMLS CUI [1,1])
Item
Stone Analysis (did the patient develop new stones in the past 12 months?)
text
C0022650 (UMLS CUI [1,1])
C0936012 (UMLS CUI [1,2])
CL.34
Code List
Stone Analysis (did the patient develop new stones in the past 12 months?)
CL Item
No (0)
C1298908 (UMLS CUI [1,1])
CL Item
Yes (1)
C1705108 (UMLS CUI [1,1])
CL Item
Unknown (9)
C0439673 (UMLS CUI [1,1])
Item
Self-monitoring: Urine specific gravity
text
C0202517 (UMLS CUI [1,1])
C0588436 (UMLS CUI [1,2])
CL.34
Code List
Self-monitoring: Urine specific gravity
CL Item
No (0)
C1298908 (UMLS CUI [1,1])
CL Item
Yes (1)
C1705108 (UMLS CUI [1,1])
CL Item
Unknown (9)
C0439673 (UMLS CUI [1,1])
Item
Self-monitoring: Urine colour chart
text
C0588436 (UMLS CUI [1,1])
C0278030 (UMLS CUI [1,2])
CL.34
Code List
Self-monitoring: Urine colour chart
CL Item
No (0)
C1298908 (UMLS CUI [1,1])
CL Item
Yes (1)
C1705108 (UMLS CUI [1,1])
CL Item
Unknown (9)
C0439673 (UMLS CUI [1,1])
Item
Self-monitoring: Urine pH
text
C0588436 (UMLS CUI [1,1])
C0042044 (UMLS CUI [1,2])
CL.34
Code List
Self-monitoring: Urine pH
CL Item
No (0)
C1298908 (UMLS CUI [1,1])
CL Item
Yes (1)
C1705108 (UMLS CUI [1,1])
CL Item
Unknown (9)
C0439673 (UMLS CUI [1,1])
Item
If yes, which method was used?
text
C0042044 (UMLS CUI [1,1])
C2911685 (UMLS CUI [1,2])
CL.116
Code List
If yes, which method was used?
CL Item
pHmeter (0)
C5447264 (UMLS CUI [1,1])
CL Item
pH paper (1)
C0042044 (UMLS CUI [1,1])
C1170938 (UMLS CUI [1,2])
CL Item
Dipstick (2)
C0430370 (UMLS CUI [1,1])
CL Item
Unknown (3)
C0439673 (UMLS CUI [1,1])
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