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ERKNet Alport registry: Visits

23 forms  
Biochemistry
Description

Biochemistry

Alias
UMLS CUI [1,1]
C0005477
Is the patient receiving RAAS antagonist therapy? (* ACE inhibitor / AT1 receptor blocker / mineralocorticoid receptor blocker)
Description

I.ras_antagonist_alport

Data type

text

Alias
UMLS CUI [1,1]
C0003015
UMLS CUI [1,2]
C0521942
UMLS CUI [1,3]
C1579268
UMLS CUI [1,4]
C0087111
UMLS CUI [1,5]
C1512698
Proteinuria measurement done since last update (or treatment start)?
Description

I.protur_alport

Data type

text

Alias
UMLS CUI [1,1]
C0033687
Date of measurement
Description

I.protur_date_alport

Data type

date

Alias
UMLS CUI [1,1]
C2985720
UMLS CUI [1,2]
C0033687
24h proteinuria (pediatric/adult) in g/24h
Description

I.protur_24h_alport

Data type

float

Alias
UMLS CUI [1,1]
C1442770
UMLS CUI [1,2]
C0033687
UMLS CUI [1,3]
C1274040
Protein/Creatinine in g/g
Description

I.protur_protcrea_alport

Data type

float

Alias
UMLS CUI [1,1]
C0428627
UMLS CUI [1,2]
C1274040
Dipstick result
Description

I.protur_dipstick_alport

Data type

text

Alias
UMLS CUI [1,1]
C0430370
UMLS CUI [1,2]
C0456984
Serum Total Protein
Description

I.alport_ser_protein

Data type

text

Alias
UMLS CUI [1,1]
C0036836
UMLS CUI [1,2]
C1274040
ACE inhibitors
Description

I.ras_alport_ace

Data type

text

Alias
UMLS CUI [1,1]
C0003015
UMLS CUI [1,2]
C1512698
Angiotensin receptor blocker
Description

I.ras_alport_arb

Data type

text

Alias
UMLS CUI [1,1]
C0521942
UMLS CUI [1,2]
C1512698
Mineralocortoid receptor blocker (spironolactone, eplerenone)
Description

I.ras_alport_mrb

Data type

text

Alias
UMLS CUI [1,1]
C1579268
UMLS CUI [1,2]
C0037982
UMLS CUI [1,3]
C0961485
Aliskiren
Description

I.ras_alport_aliskiren

Data type

text

Alias
UMLS CUI [1,1]
C1120110
Serum Albumin in g/l
Description

I.lab_ser_albumin_alport

Data type

float

Alias
UMLS CUI [1,1]
C0523465
UMLS CUI [1,2]
C1274040
Quality + perf. parameters
Description

Quality + perf. parameters

Alias
UMLS CUI [1,1]
C1518965
Nephrotic syndrome
Description

I.alport_nephsyn

Data type

text

Alias
UMLS CUI [1,1]
C0027726
if yes: Date
Description

I.alport_nephsyn_date

Data type

date

Alias
UMLS CUI [1,1]
C0574845
UMLS CUI [1,2]
C0027726
if yes: Description
Description

I.alport_nephsyn_desc

Data type

text

Alias
UMLS CUI [1,1]
C0678257
UMLS CUI [1,2]
C0027726
CFR
Description

I.alport_cfr

Data type

text

Alias
UMLS CUI [1,1]
C0022661
if yes: Description
Description

I.alport_cfr_desc

Data type

text

Alias
UMLS CUI [1,1]
C0678257
UMLS CUI [1,2]
C0022661
ESKD
Description

I.alport_eskd

Data type

text

Alias
UMLS CUI [1,1]
C2316810
if yes: ESKD Date
Description

I.alport_eskd_date

Data type

date

Alias
UMLS CUI [1,1]
C2316810
UMLS CUI [1,2]
C0574845
if yes: Description
Description

I.alport_eskd_desc

Data type

text

Alias
UMLS CUI [1,1]
C2316810
UMLS CUI [1,2]
C0678257
Hearing loss
Description

I.alport_hearloss_quality

Data type

text

Alias
UMLS CUI [1,1]
C3887873
if yes: Please specify
Description

I.alport_hearloss_spec

Data type

text

Alias
UMLS CUI [1,1]
C1521902
UMLS CUI [1,2]
C3887873
Hearing aids
Description

I.alport_hearaids

Data type

text

Alias
UMLS CUI [1,1]
C0018768
If yes: Date
Description

I.alport_hearaids_date

Data type

date

Alias
UMLS CUI [1,1]
C0574845
UMLS CUI [1,2]
C0018768
Ocular lesions
Description

I.alport_ocules_quality

Data type

text

Alias
UMLS CUI [1,1]
C0586406
UMLS CUI [1,2]
C0221198
if yes: Anterior lenticonus
Description

I.alport_ocules_ant_lent

Data type

boolean

Alias
UMLS CUI [1,1]
C0015392
UMLS CUI [1,2]
C0221198
UMLS CUI [1,3]
C0344262
if yes: Maculopathy consisting of whitish or yellowish flecks or granulations in the perimacular region
Description

I.alport_ocules_maculopathy

Data type

boolean

Alias
UMLS CUI [1,1]
C0015392
UMLS CUI [1,2]
C0221198
UMLS CUI [1,3]
C0730362
if yes: Corneal endothelial vesicles and/or recurrent corneal erosion
Description

I.alport_ocules_vesicles

Data type

boolean

Alias
UMLS CUI [1,1]
C0015392
UMLS CUI [1,2]
C0221198
UMLS CUI [1,3]
C0392163
UMLS CUI [1,4]
C3277883
if yes: Bilateral posterior subcapsular cataracts
Description

I.alport_ocules_cataracts

Data type

boolean

Alias
UMLS CUI [1,1]
C0015392
UMLS CUI [1,2]
C4303033
UMLS CUI [1,3]
C0221198
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Similar models

ERKNet Alport registry: Visits

23 forms
Name
Type
Description | Question | Decode (Coded Value)
Data type
Alias
Item Group
Biochemistry
C0005477 (UMLS CUI [1,1])
Item
Is the patient receiving RAAS antagonist therapy? (* ACE inhibitor / AT1 receptor blocker / mineralocorticoid receptor blocker)
text
C0003015 (UMLS CUI [1,1])
C0521942 (UMLS CUI [1,2])
C1579268 (UMLS CUI [1,3])
C0087111 (UMLS CUI [1,4])
C1512698 (UMLS CUI [1,5])
CL.2
Code List
Is the patient receiving RAAS antagonist therapy? (* ACE inhibitor / AT1 receptor blocker / mineralocorticoid receptor blocker)
CL Item
No (0)
C1298908 (UMLS CUI [1,1])
CL Item
Yes (1)
C5399964 (UMLS CUI [1,1])
Item
Proteinuria measurement done since last update (or treatment start)?
text
C0033687 (UMLS CUI [1,1])
CL.26
Code List
Proteinuria measurement done since last update (or treatment start)?
CL Item
Not done (0)
C1272696 (UMLS CUI [1,1])
C0033687 (UMLS CUI [1,2])
CL Item
24h proteinuria (1)
C1442770 (UMLS CUI [1,1])
C0033687 (UMLS CUI [1,2])
CL Item
Protein/Creatinine (2)
C0033687 (UMLS CUI [1,1])
C0486293 (UMLS CUI [1,2])
CL Item
Dipstick result (3)
C0430370 (UMLS CUI [1,1])
C0456984 (UMLS CUI [1,2])
CL Item
Not applicable (9)
C1272460 (UMLS CUI [1,1])
I.protur_date_alport
Item
Date of measurement
date
C2985720 (UMLS CUI [1,1])
C0033687 (UMLS CUI [1,2])
I.protur_24h_alport
Item
24h proteinuria (pediatric/adult) in g/24h
float
C1442770 (UMLS CUI [1,1])
C0033687 (UMLS CUI [1,2])
C1274040 (UMLS CUI [1,3])
I.protur_protcrea_alport
Item
Protein/Creatinine in g/g
float
C0428627 (UMLS CUI [1,1])
C1274040 (UMLS CUI [1,2])
Item
Dipstick result
text
C0430370 (UMLS CUI [1,1])
C0456984 (UMLS CUI [1,2])
CL.33
Code List
Dipstick result
CL Item
0 (0)
C0430370 (UMLS CUI [1,1])
C0456984 (UMLS CUI [1,2])
C1513916 (UMLS CUI [1,3])
CL Item
(+) (1)
C0430370 (UMLS CUI [1,1])
C0456984 (UMLS CUI [1,2])
C0442722 (UMLS CUI [1,3])
CL Item
+ (2)
C0430370 (UMLS CUI [1,1])
C0456984 (UMLS CUI [1,2])
C0442722 (UMLS CUI [1,3])
CL Item
++ (3)
C0430370 (UMLS CUI [1,1])
C0456984 (UMLS CUI [1,2])
C0442723 (UMLS CUI [1,3])
CL Item
+++ (4)
C0430370 (UMLS CUI [1,1])
C0456984 (UMLS CUI [1,2])
C0442724 (UMLS CUI [1,3])
I.alport_ser_protein
Item
Serum Total Protein
text
C0036836 (UMLS CUI [1,1])
C1274040 (UMLS CUI [1,2])
Item
ACE inhibitors
text
C0003015 (UMLS CUI [1,1])
C1512698 (UMLS CUI [1,2])
CL.2
Code List
ACE inhibitors
CL Item
No (0)
C1298908 (UMLS CUI [1,1])
CL Item
Yes (1)
C5399964 (UMLS CUI [1,1])
Item
Angiotensin receptor blocker
text
C0521942 (UMLS CUI [1,1])
C1512698 (UMLS CUI [1,2])
CL.2
Code List
Angiotensin receptor blocker
CL Item
No (0)
C1298908 (UMLS CUI [1,1])
CL Item
Yes (1)
C5399964 (UMLS CUI [1,1])
Item
Mineralocortoid receptor blocker (spironolactone, eplerenone)
text
C1579268 (UMLS CUI [1,1])
C0037982 (UMLS CUI [1,2])
C0961485 (UMLS CUI [1,3])
CL.2
Code List
Mineralocortoid receptor blocker (spironolactone, eplerenone)
CL Item
No (0)
C1298908 (UMLS CUI [1,1])
CL Item
Yes (1)
C5399964 (UMLS CUI [1,1])
Item
Aliskiren
text
C1120110 (UMLS CUI [1,1])
CL.2
Code List
Aliskiren
CL Item
No (0)
C1298908 (UMLS CUI [1,1])
CL Item
Yes (1)
C5399964 (UMLS CUI [1,1])
I.lab_ser_albumin_alport
Item
Serum Albumin in g/l
float
C0523465 (UMLS CUI [1,1])
C1274040 (UMLS CUI [1,2])
Item Group
Quality + perf. parameters
C1518965 (UMLS CUI [1,1])
Item
Nephrotic syndrome
text
C0027726 (UMLS CUI [1,1])
CL.2
Code List
Nephrotic syndrome
CL Item
No (0)
C1298908 (UMLS CUI [1,1])
CL Item
Yes (1)
C5399964 (UMLS CUI [1,1])
I.alport_nephsyn_date
Item
if yes: Date
date
C0574845 (UMLS CUI [1,1])
C0027726 (UMLS CUI [1,2])
I.alport_nephsyn_desc
Item
if yes: Description
text
C0678257 (UMLS CUI [1,1])
C0027726 (UMLS CUI [1,2])
Item
CFR
text
C0022661 (UMLS CUI [1,1])
CL.2
Code List
CFR
CL Item
No (0)
C1298908 (UMLS CUI [1,1])
CL Item
Yes (1)
C5399964 (UMLS CUI [1,1])
I.alport_cfr_desc
Item
if yes: Description
text
C0678257 (UMLS CUI [1,1])
C0022661 (UMLS CUI [1,2])
Item
ESKD
text
C2316810 (UMLS CUI [1,1])
CL.2
Code List
ESKD
CL Item
No (0)
C1298908 (UMLS CUI [1,1])
CL Item
Yes (1)
C5399964 (UMLS CUI [1,1])
I.alport_eskd_date
Item
if yes: ESKD Date
date
C2316810 (UMLS CUI [1,1])
C0574845 (UMLS CUI [1,2])
I.alport_eskd_desc
Item
if yes: Description
text
C2316810 (UMLS CUI [1,1])
C0678257 (UMLS CUI [1,2])
Item
Hearing loss
text
C3887873 (UMLS CUI [1,1])
CL.2
Code List
Hearing loss
CL Item
No (0)
C1298908 (UMLS CUI [1,1])
CL Item
Yes (1)
C5399964 (UMLS CUI [1,1])
Item
if yes: Please specify
text
C1521902 (UMLS CUI [1,1])
C3887873 (UMLS CUI [1,2])
CL.111
Code List
if yes: Please specify
CL Item
monolateral (1)
C0205092 (UMLS CUI [1,1])
C3887873 (UMLS CUI [1,2])
CL Item
bilateral (2)
C0238767 (UMLS CUI [1,1])
C3887873 (UMLS CUI [1,2])
Item
Hearing aids
text
C0018768 (UMLS CUI [1,1])
CL.2
Code List
Hearing aids
CL Item
No (0)
C1298908 (UMLS CUI [1,1])
CL Item
Yes (1)
C5399964 (UMLS CUI [1,1])
I.alport_hearaids_date
Item
If yes: Date
date
C0574845 (UMLS CUI [1,1])
C0018768 (UMLS CUI [1,2])
Item
Ocular lesions
text
C0586406 (UMLS CUI [1,1])
C0221198 (UMLS CUI [1,2])
CL.2
Code List
Ocular lesions
CL Item
No (0)
C1298908 (UMLS CUI [1,1])
CL Item
Yes (1)
C5399964 (UMLS CUI [1,1])
I.alport_ocules_ant_lent
Item
if yes: Anterior lenticonus
boolean
C0015392 (UMLS CUI [1,1])
C0221198 (UMLS CUI [1,2])
C0344262 (UMLS CUI [1,3])
I.alport_ocules_maculopathy
Item
if yes: Maculopathy consisting of whitish or yellowish flecks or granulations in the perimacular region
boolean
C0015392 (UMLS CUI [1,1])
C0221198 (UMLS CUI [1,2])
C0730362 (UMLS CUI [1,3])
I.alport_ocules_vesicles
Item
if yes: Corneal endothelial vesicles and/or recurrent corneal erosion
boolean
C0015392 (UMLS CUI [1,1])
C0221198 (UMLS CUI [1,2])
C0392163 (UMLS CUI [1,3])
C3277883 (UMLS CUI [1,4])
I.alport_ocules_cataracts
Item
if yes: Bilateral posterior subcapsular cataracts
boolean
C0015392 (UMLS CUI [1,1])
C4303033 (UMLS CUI [1,2])
C0221198 (UMLS CUI [1,3])
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