ID

30238

Description

Electronic Case Report Forms for the "Safety of the Living Kidney Donor - German National Register" (SOLKID-GNR).

Keywords

  1. 5/23/18 5/23/18 - Julian Varghese
  2. 1/23/19 1/23/19 - Sarah Riepenhausen
  3. 7/5/21 7/5/21 - Leonard Greulich
  4. 5/5/22 5/5/22 - Adrian Schulz
Copyright Holder

The SOLKID-GNR Consortium

Uploaded on

May 23, 2018

DOI

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License

Creative Commons BY-NC 3.0

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SOLKID-GNR

Donation factors

Donation factors
Description

Donation factors

Alias
UMLS CUI-1
C0080231
Who do you donate to?
Description

T0_17

Data type

integer

Alias
UMLS CUI [1,1]
C0080231
UMLS CUI [1,2]
C1709850
Initiative to donate
Description

T0_18

Data type

integer

Alias
UMLS CUI [1,1]
C0080231
UMLS CUI [1,2]
C0424093
Duration of decision
Description

T0_19

Data type

integer

Alias
UMLS CUI [1,1]
C0449238
UMLS CUI [1,2]
C0679006
Duration of preperation
Description

T0_20

Data type

integer

Alias
UMLS CUI [1,1]
C0449238
UMLS CUI [1,2]
C1521827
Feedback regarding duration of preperation
Description

T0_20a

Data type

integer

Alias
UMLS CUI [1,1]
C0449238
UMLS CUI [1,2]
C1521827
Feedback regarding information on risks
Description

T0_21

Data type

integer

Alias
UMLS CUI [1,1]
C1955348
UMLS CUI [1,2]
C0332306
Feedback of dependants regarding donation
Description

T0_22

Data type

integer

Alias
UMLS CUI [1,1]
C0080103
UMLS CUI [1,2]
C0871010
UMLS CUI [1,3]
C0080231
Feeling pressed for donation
Description

T0_23

Data type

integer

Alias
UMLS CUI [1,1]
C0080231
UMLS CUI [1,2]
C0680855
Self-Assessment regarding health of organ receiver
Description

T0_24

Data type

integer

Alias
UMLS CUI [1,1]
C0018759
UMLS CUI [1,2]
C0040732
UMLS CUI [1,3]
C1709850
Relation to organ receiver
Description

T0_25

Data type

integer

Alias
UMLS CUI [1,1]
C0439849
UMLS CUI [1,2]
C1709850
Will the receiver treat the donated kidgney well
Description

T0_26

Data type

integer

Alias
UMLS CUI [1,1]
C0022671
UMLS CUI [1,2]
C0749659
Will your relation to organ receiver change after donation
Description

T0_27

Data type

integer

Alias
UMLS CUI [1,1]
C2045651
UMLS CUI [1,2]
C1709850
Retrospectively, would you donate again
Description

if 4 (rather no) or 5 (no) enquire id T2_4.1 <T2 | T3 | ff>

Data type

integer

Alias
UMLS CUI [1,1]
C0080231
UMLS CUI [1,2]
C0035110
Retrospectively, would you donate again, why not free text
Description

<T2 | T3 | ff>

Data type

text

Alias
UMLS CUI [1,1]
C0080231
UMLS CUI [1,2]
C0035110
UMLS CUI [1,3]
C2826287
Retrospectively, how would you rate informed consent
Description

<T2 | T3 | ff>

Data type

integer

Alias
UMLS CUI [1,1]
C1955348
UMLS CUI [1,2]
C1514923
Is organ receiver alive
Description

If no, skip to id T2_12 <T2 | T3 | ff>

Data type

boolean

Alias
UMLS CUI [1,1]
C1709850
UMLS CUI [1,2]
C2584946
Does organ receiver require dialysis?
Description

<T2 | T3 | ff>

Data type

boolean

Alias
UMLS CUI [1,1]
C1709850
UMLS CUI [1,2]
C0011946
Self-assessment health of organ receiver
Description

<T2 | T3 | ff>

Data type

integer

Alias
UMLS CUI [1,1]
C0018759
UMLS CUI [1,2]
C0040732
UMLS CUI [1,3]
C1709850
Does organ receiver treat the donated kidney well
Description

<T2 | T3 | ff>

Data type

integer

Alias
UMLS CUI [1,1]
C0022671
UMLS CUI [1,2]
C0749659
Has your relation to organ receiver changed
Description

<T2 | T3 | ff>

Data type

integer

Alias
UMLS CUI [1,1]
C2045651
UMLS CUI [1,2]
C1709850
Limited in everyday life due to illness of organ receiver
Description

<T2 | T3 | ff>

Data type

integer

Alias
UMLS CUI [1,1]
C0221423
UMLS CUI [1,2]
C0443288
UMLS CUI [1,3]
C1709850
Limited in everyday life due to the donation
Description

<T2 | T3 | ff>

Data type

integer

Alias
UMLS CUI [1,1]
C0443288
UMLS CUI [1,2]
C0001288
UMLS CUI [1,3]
C0080231
Satisfied with result of the donation
Description

<T2 | T3 | ff>

Data type

integer

Alias
UMLS CUI [1,1]
C0242428
UMLS CUI [1,2]
C0080231
UMLS CUI [1,3]
C1274040
Physical strain due to donation
Description

<T2 | T3 | ff>

Data type

integer

Alias
UMLS CUI [1,1]
C1142435
UMLS CUI [1,2]
C0080231
UMLS CUI [1,3]
C0566251
Psychic strain due to donation
Description

<T2 | T3 | ff>

Data type

integer

Alias
UMLS CUI [1,1]
C0038443
UMLS CUI [1,2]
C0080231
UMLS CUI [1,3]
C0566251
Complications after donation
Description

<T2 | T3 | ff>

Data type

boolean

Alias
UMLS CUI [1,1]
C0009566
UMLS CUI [1,2]
C0080231
Complications for organ receiver after donation
Description

<T2 | T3 | ff>

Data type

boolean

Alias
UMLS CUI [1,1]
C0009566
UMLS CUI [1,2]
C0080231
UMLS CUI [1,3]
C1709850
Week unable to week after donation
Description

<T2 | T3 | ff>

Data type

integer

Measurement units
  • w
Alias
UMLS CUI [1,1]
C0449238
UMLS CUI [1,2]
C0849751
w
Occupational or everyday activities possible
Description

<T2 | T3 | ff>

Data type

integer

Alias
UMLS CUI [1]
C3641747
Taking cure
Description

If 1:Yes, enquire T3_20.1 + T3_20.2 <T3>

Data type

integer

Alias
UMLS CUI [1]
C0018740
Taking cure has helped physically
Description

<T3>

Data type

integer

Alias
UMLS CUI [1,1]
C2986411
UMLS CUI [1,2]
C0031808
UMLS CUI [1,3]
C0018740
The cure has helped emotionally
Description

<T3>

Data type

integer

Alias
UMLS CUI [1,1]
C2984554
UMLS CUI [1,2]
C2986411
UMLS CUI [1,3]
C0018740
Taking cure again
Description

<T3>

Data type

boolean

Alias
UMLS CUI [1,1]
C0018740
UMLS CUI [1,2]
C0205341
Attended follow-up testing last year
Description

if yes, enquire item_id T3_22.1 + T3_22.2 <T3|ff>

Data type

boolean

Alias
UMLS CUI [1]
C0001758
Location follow-up testing
Description

<T3|ff>

Data type

integer

Alias
UMLS CUI [1,1]
C0001758
UMLS CUI [1,2]
C0450429
Frequency follow-up testing
Description

<T3|ff>

Data type

integer

Alias
UMLS CUI [1,1]
C0439603
UMLS CUI [1,2]
C0001758
Pregnant after donation?
Description

Only with female participants.If Yes, enquire id T3_23.1 <T3|ff>

Data type

boolean

Alias
UMLS CUI [1,1]
C0080231
UMLS CUI [1,2]
C0032961
Pregnancy complications
Description

<T3|ff>

Data type

integer

Alias
UMLS CUI [1]
C0032962

Similar models

Donation factors

Name
Type
Description | Question | Decode (Coded Value)
Data type
Alias
Item Group
Donation factors
C0080231 (UMLS CUI-1)
Item
Who do you donate to?
integer
C0080231 (UMLS CUI [1,1])
C1709850 (UMLS CUI [1,2])
Code List
Who do you donate to?
CL Item
Spouse (Partner) (1)
CL Item
Child (2)
CL Item
Brother (3)
CL Item
Sister (4)
CL Item
Father (5)
CL Item
Mother (6)
CL Item
Other (7)
Item
Initiative to donate
integer
C0080231 (UMLS CUI [1,1])
C0424093 (UMLS CUI [1,2])
Code List
Initiative to donate
CL Item
From yourself (1)
CL Item
From a member of your family (2)
CL Item
From receiver (3)
CL Item
From relatives of the recipient (4)
CL Item
From a doctor (5)
CL Item
From others (6)
Item
Duration of decision
integer
C0449238 (UMLS CUI [1,1])
C0679006 (UMLS CUI [1,2])
Code List
Duration of decision
CL Item
Less than 3 months (1)
CL Item
3-6 months (2)
CL Item
6-12 months (3)
CL Item
More than 12 months (4)
Item
Duration of preperation
integer
C0449238 (UMLS CUI [1,1])
C1521827 (UMLS CUI [1,2])
Code List
Duration of preperation
CL Item
Less than 3 months (1)
CL Item
3-6 months (2)
CL Item
6-12 months (3)
CL Item
More than 12 months (4)
Item
Feedback regarding duration of preperation
integer
C0449238 (UMLS CUI [1,1])
C1521827 (UMLS CUI [1,2])
Code List
Feedback regarding duration of preperation
CL Item
.... too long (1)
CL Item
.... too short (2)
CL Item
.... just right (3)
Item
Feedback regarding information on risks
integer
C1955348 (UMLS CUI [1,1])
C0332306 (UMLS CUI [1,2])
Code List
Feedback regarding information on risks
CL Item
Very bad (1)
CL Item
Bad (2)
CL Item
Moderate (3)
CL Item
Good (4)
CL Item
Very good (5)
Item
Feedback of dependants regarding donation
integer
C0080103 (UMLS CUI [1,1])
C0871010 (UMLS CUI [1,2])
C0080231 (UMLS CUI [1,3])
Code List
Feedback of dependants regarding donation
CL Item
Very positive (1)
CL Item
positive (2)
CL Item
Neutral (3)
CL Item
Negative (4)
CL Item
Very negative (5)
Item
Feeling pressed for donation
integer
C0080231 (UMLS CUI [1,1])
C0680855 (UMLS CUI [1,2])
Code List
Feeling pressed for donation
CL Item
Not at all (1)
CL Item
A little bit (2)
CL Item
Moderate (3)
CL Item
Strong (4)
CL Item
Very strong (5)
Item
Self-Assessment regarding health of organ receiver
integer
C0018759 (UMLS CUI [1,1])
C0040732 (UMLS CUI [1,2])
C1709850 (UMLS CUI [1,3])
Code List
Self-Assessment regarding health of organ receiver
CL Item
Very bad (1)
CL Item
Bad (2)
CL Item
Moderate (3)
CL Item
Good (4)
CL Item
Very good (5)
Item
Relation to organ receiver
integer
C0439849 (UMLS CUI [1,1])
C1709850 (UMLS CUI [1,2])
Code List
Relation to organ receiver
CL Item
Very bad (1)
CL Item
Bad (2)
CL Item
Moderate (3)
CL Item
Good (4)
CL Item
Very good (5)
Item
Will the receiver treat the donated kidgney well
integer
C0022671 (UMLS CUI [1,1])
C0749659 (UMLS CUI [1,2])
Code List
Will the receiver treat the donated kidgney well
CL Item
Not at all (1)
CL Item
A little bit (2)
CL Item
Moderate (3)
CL Item
Good (4)
CL Item
Very good (5)
Item
Will your relation to organ receiver change after donation
integer
C2045651 (UMLS CUI [1,1])
C1709850 (UMLS CUI [1,2])
Code List
Will your relation to organ receiver change after donation
CL Item
Very negative (1)
CL Item
Rather negative (2)
CL Item
Do not change (3)
CL Item
Rather positive (4)
CL Item
Very positive (5)
Item
Retrospectively, would you donate again
integer
C0080231 (UMLS CUI [1,1])
C0035110 (UMLS CUI [1,2])
Code List
Retrospectively, would you donate again
CL Item
In any case (1)
CL Item
Rather yes (2)
CL Item
Don't know (3)
CL Item
Rather not (4)
CL Item
Under no circumstances (5)
T2_4.1
Item
Retrospectively, would you donate again, why not free text
text
C0080231 (UMLS CUI [1,1])
C0035110 (UMLS CUI [1,2])
C2826287 (UMLS CUI [1,3])
Item
Retrospectively, how would you rate informed consent
integer
C1955348 (UMLS CUI [1,1])
C1514923 (UMLS CUI [1,2])
Code List
Retrospectively, how would you rate informed consent
CL Item
Very bad (1)
CL Item
Bad (2)
CL Item
Moderate (3)
CL Item
Good (4)
CL Item
Very good (5)
T2_6
Item
Is organ receiver alive
boolean
C1709850 (UMLS CUI [1,1])
C2584946 (UMLS CUI [1,2])
T2_7
Item
Does organ receiver require dialysis?
boolean
C1709850 (UMLS CUI [1,1])
C0011946 (UMLS CUI [1,2])
Item
Self-assessment health of organ receiver
integer
C0018759 (UMLS CUI [1,1])
C0040732 (UMLS CUI [1,2])
C1709850 (UMLS CUI [1,3])
Code List
Self-assessment health of organ receiver
CL Item
Very bad (1)
CL Item
Bad (2)
CL Item
Moderate (3)
CL Item
Good (4)
CL Item
Very good (5)
Item
Does organ receiver treat the donated kidney well
integer
C0022671 (UMLS CUI [1,1])
C0749659 (UMLS CUI [1,2])
Code List
Does organ receiver treat the donated kidney well
CL Item
Not at all (1)
CL Item
A little bit (2)
CL Item
Moderate (3)
CL Item
Good (4)
CL Item
Very good (5)
Item
Has your relation to organ receiver changed
integer
C2045651 (UMLS CUI [1,1])
C1709850 (UMLS CUI [1,2])
Code List
Has your relation to organ receiver changed
CL Item
Very negative (1)
CL Item
Rather negative (2)
CL Item
Not changed (3)
CL Item
Rather positive (4)
CL Item
Very positive (5)
Item
Limited in everyday life due to illness of organ receiver
integer
C0221423 (UMLS CUI [1,1])
C0443288 (UMLS CUI [1,2])
C1709850 (UMLS CUI [1,3])
Code List
Limited in everyday life due to illness of organ receiver
CL Item
Not at all (1)
CL Item
A little bit (2)
CL Item
Moderate (3)
CL Item
Strong (4)
CL Item
Very strong (5)
Item
Limited in everyday life due to the donation
integer
C0443288 (UMLS CUI [1,1])
C0001288 (UMLS CUI [1,2])
C0080231 (UMLS CUI [1,3])
Code List
Limited in everyday life due to the donation
CL Item
Not at all (1)
CL Item
A little bit (2)
CL Item
Moderate (3)
CL Item
Strong (4)
CL Item
Very strong (5)
Item
Satisfied with result of the donation
integer
C0242428 (UMLS CUI [1,1])
C0080231 (UMLS CUI [1,2])
C1274040 (UMLS CUI [1,3])
Code List
Satisfied with result of the donation
CL Item
Very satisfied (1)
CL Item
Rather satisfied (2)
CL Item
Neutral (3)
CL Item
Rather dissatisfied (4)
CL Item
Very dissatisfied (5)
Item
Physical strain due to donation
integer
C1142435 (UMLS CUI [1,1])
C0080231 (UMLS CUI [1,2])
C0566251 (UMLS CUI [1,3])
Code List
Physical strain due to donation
CL Item
Not at all (1)
CL Item
A little bit (2)
CL Item
Moderate (3)
CL Item
Strong (4)
CL Item
Very strong (5)
Item
Psychic strain due to donation
integer
C0038443 (UMLS CUI [1,1])
C0080231 (UMLS CUI [1,2])
C0566251 (UMLS CUI [1,3])
Code List
Psychic strain due to donation
CL Item
Not at all (1)
CL Item
A little bit (2)
CL Item
Moderate (3)
CL Item
Strong (4)
CL Item
Very strong (5)
T2_16
Item
Complications after donation
boolean
C0009566 (UMLS CUI [1,1])
C0080231 (UMLS CUI [1,2])
T2_17
Item
Complications for organ receiver after donation
boolean
C0009566 (UMLS CUI [1,1])
C0080231 (UMLS CUI [1,2])
C1709850 (UMLS CUI [1,3])
T2_18
Item
Week unable to week after donation
integer
C0449238 (UMLS CUI [1,1])
C0849751 (UMLS CUI [1,2])
Item
Occupational or everyday activities possible
integer
C3641747 (UMLS CUI [1])
Code List
Occupational or everyday activities possible
CL Item
Not at all (0 %) (1)
CL Item
25 % of the time (2)
CL Item
50 % of the time (3)
CL Item
75% of the time (4)
CL Item
Complete (100%) (5)
Item
Taking cure
integer
C0018740 (UMLS CUI [1])
Code List
Taking cure
CL Item
Yes (1)
CL Item
No, I didn't want (2)
CL Item
No, I was not offered one (3)
CL Item
No, because the health insurance company refused (4)
Item
Taking cure has helped physically
integer
C2986411 (UMLS CUI [1,1])
C0031808 (UMLS CUI [1,2])
C0018740 (UMLS CUI [1,3])
Code List
Taking cure has helped physically
CL Item
yes (1)
CL Item
no (2)
CL Item
do not know (3)
Item
The cure has helped emotionally
integer
C2984554 (UMLS CUI [1,1])
C2986411 (UMLS CUI [1,2])
C0018740 (UMLS CUI [1,3])
Code List
The cure has helped emotionally
CL Item
yes (1)
CL Item
no (2)
CL Item
do not know (3)
T3_21
Item
Taking cure again
boolean
C0018740 (UMLS CUI [1,1])
C0205341 (UMLS CUI [1,2])
T3_22
Item
Attended follow-up testing last year
boolean
C0001758 (UMLS CUI [1])
Item
Location follow-up testing
integer
C0001758 (UMLS CUI [1,1])
C0450429 (UMLS CUI [1,2])
Code List
Location follow-up testing
CL Item
family doctor: (1)
CL Item
established kidney specialist (nephrologist) (2)
CL Item
Transplantation centre (3)
Item
Frequency follow-up testing
integer
C0439603 (UMLS CUI [1,1])
C0001758 (UMLS CUI [1,2])
Code List
Frequency follow-up testing
CL Item
1 time (1)
CL Item
2 times (2)
CL Item
3 times (3)
CL Item
more than 4 times (4)
T3_23
Item
Pregnant after donation?
boolean
C0080231 (UMLS CUI [1,1])
C0032961 (UMLS CUI [1,2])
Item
Pregnancy complications
integer
C0032962 (UMLS CUI [1])
Code List
Pregnancy complications
CL Item
Hypertension (1)
CL Item
Diabetes (2)
CL Item
miscarriages (3)

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