ID
38357
Beschrijving
ICHOM Congenital Upper Limb Anomalies data collection Version 1.0.0 August 31st, 2018 International Consortium for Health Outcomes Measurement (ICHOM), Source: http://www.ichom.org/ For Congenital Upper Limb Anomalies, the following conditions and treatment approaches (or interventions) are covered by our Standard Set. Conditions: Congenital Hand Anomaly | Congenital Upper Limb Anomaly | Apert | Cleft Hand | Constriction Ring | Polydactyly | Radial Ray Deficiency | Symbrachydactyly | Thumb Hypoplasia | Ulnar Dysplasia | Ulnar Ray Deficiency Treatment approaches: Surgery | Rehabilitation | Other Recognising that different countries have established practices and may take time to transition to these time points, ICHOM has agreed age categories for measurement that fit around the recommended specific ages: 6 months: +/- 1 month 1 year: +/- 1 month 2 years: +/- 1 month 8 years: 8-9 years 12 years: 11 - 13 years 15 years: 14 - 15 years End of Paediatric Care: 16 - 18 years (according to the policy of each institution for end of paediatric care) Post-operative period: up to 6 months following the date of the operation This document contains the Follow-up, 6 months, 1 and 2 years - Clinical Form. It has to be filled in 6 months, 1 and 2 years after Patient's entry into set. Note: the goniometrie only has to be filled in for one/two years old children. Collecting Patient-Reported Outcome Measures: Joint Mobility Questions. There are no licensing requirements to use these questions. PROMIS Upper Extremity, Global Health, Peer relationships, Anxiety, Depression. As there is an official distribution site, these questionnaires will not be included in this version of the standard set. For more information see: http://www.healthmeasures.net/exploremeasurement-systems/promis/obtain-administer-measures Goniometry, Dynamometry for Clinician. Follow the clinical assessment recommendations of the American Dynamometry - Clinician Society of Hand Therapists. Manual Muscle Strength Testing – Clinician. Use the Medical Research Council MMST grading. Oberg-Manske-Tonkin Classification. For more information see: Oberg KC, Feenstra JM, Manske PR, et al. Developmental biology and classification of congenital anomalies of the hand and upper extremity. J Hand Surg Am. 2010;35:2066. The Standard set of ICHOM was supported by the Great Ormond Stres Hospital, the Boston Children’s Hospital, the Erasmus MC, the Royal North Shore Hospital, the Texas Scottish Rite Hospital and the Loma Linda University.
Link
Trefwoorden
Versies (3)
- 12-10-19 12-10-19 -
- 23-10-19 23-10-19 - Sarah Riepenhausen
- 30-04-20 30-04-20 - Sarah Riepenhausen
Houder van rechten
ICHOM
Geüploaded op
12 oktober 2019
DOI
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Licentie
Creative Commons BY-NC 3.0
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ICHOM Congenital Upper Limb Anomalies
Follow-up, 6 months, 1 and 2 years - Clinical Form
- StudyEvent: ODM
Beschrijving
Clinical Status
Alias
- UMLS CUI-1
- C0449440
Beschrijving
Inclusion Criteria: All patients Timing: On all forms Data Source: Clinical Type: Single answer
Datatype
integer
Alias
- UMLS CUI [1]
- C0009488
Beschrijving
Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinical Type: Multiple answer Separate multiple entries with ";"
Datatype
boolean
Alias
- UMLS CUI [1,1]
- C1521725
- UMLS CUI [1,2]
- C0009488
- UMLS CUI [2,1]
- C1298908
- UMLS CUI [2,2]
- C2359476
Beschrijving
Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinical Type: Multiple answer Separate multiple entries with ";"
Datatype
boolean
Alias
- UMLS CUI [1,1]
- C1521725
- UMLS CUI [1,2]
- C0009488
- UMLS CUI [2]
- C3277906
- UMLS CUI [3,1]
- C0018787
- UMLS CUI [3,2]
- C1704258
Beschrijving
Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinical Type: Multiple answer Separate multiple entries with ";"
Datatype
boolean
Alias
- UMLS CUI [1,1]
- C1521725
- UMLS CUI [1,2]
- C0009488
- UMLS CUI [2,1]
- C0042066
- UMLS CUI [2,2]
- C1704258
- UMLS CUI [3,1]
- C0042066
- UMLS CUI [3,2]
- C3887504
Beschrijving
Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinical Type: Multiple answer Separate multiple entries with ";"
Datatype
boolean
Alias
- UMLS CUI [1,1]
- C1521725
- UMLS CUI [1,2]
- C0009488
- UMLS CUI [2]
- C0424605
- UMLS CUI [3]
- C0851265
Beschrijving
Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinical Type: Multiple answer Separate multiple entries with ";"
Datatype
boolean
Alias
- UMLS CUI [1,1]
- C1521725
- UMLS CUI [1,2]
- C0009488
- UMLS CUI [2]
- C0004936
- UMLS CUI [3]
- C0004930
Beschrijving
Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinical Type: Multiple answer Separate multiple entries with ";"
Datatype
boolean
Alias
- UMLS CUI [1,1]
- C1521725
- UMLS CUI [1,2]
- C0009488
- UMLS CUI [2]
- C0009450
- UMLS CUI [3,1]
- C0040549
- UMLS CUI [3,2]
- C0012634
Beschrijving
Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinical Type: Multiple answer Separate multiple entries with ";"
Datatype
boolean
Alias
- UMLS CUI [1,1]
- C1521725
- UMLS CUI [1,2]
- C0009488
- UMLS CUI [2,1]
- C0521362
- UMLS CUI [2,2]
- C1704258
- UMLS CUI [3,1]
- C0521362
- UMLS CUI [3,2]
- C3887504
Beschrijving
Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinical Type: Multiple answer Separate multiple entries with ";"
Datatype
boolean
Alias
- UMLS CUI [1,1]
- C1521725
- UMLS CUI [1,2]
- C0009488
- UMLS CUI [2,1]
- C0026860
- UMLS CUI [2,2]
- C3887504
- UMLS CUI [3,1]
- C0026860
- UMLS CUI [3,2]
- C1704258
Beschrijving
Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinical Type: Multiple answer Separate multiple entries with ";"
Datatype
boolean
Alias
- UMLS CUI [1,1]
- C1521725
- UMLS CUI [1,2]
- C0009488
- UMLS CUI [2,1]
- C0205394
- UMLS CUI [2,2]
- C0037303
- UMLS CUI [2,3]
- C0024947
- UMLS CUI [2,4]
- C1704258
Beschrijving
Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinical Type: Multiple answer Separate multiple entries with ";"
Datatype
boolean
Alias
- UMLS CUI [1,1]
- C1521725
- UMLS CUI [1,2]
- C0009488
- UMLS CUI [2,1]
- C2709248
- UMLS CUI [2,2]
- C1704258
- UMLS CUI [3]
- C1709770
Beschrijving
Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinical Type: Multiple answer Separate multiple entries with ";"
Datatype
boolean
Alias
- UMLS CUI [1,1]
- C1521725
- UMLS CUI [1,2]
- C0009488
- UMLS CUI [2,1]
- C0279810
- UMLS CUI [2,2]
- C1704258
- UMLS CUI [3,1]
- C0279810
- UMLS CUI [3,2]
- C3887504
Beschrijving
Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinical Type: Multiple answer Separate multiple entries with ";"
Datatype
boolean
Alias
- UMLS CUI [1,1]
- C1521725
- UMLS CUI [1,2]
- C0009488
- UMLS CUI [2,1]
- C0205470
- UMLS CUI [2,2]
- C1704258
- UMLS CUI [3,1]
- C0205470
- UMLS CUI [3,2]
- C3887504
Beschrijving
Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinical Type: Multiple answer Separate multiple entries with ";"
Datatype
boolean
Alias
- UMLS CUI [1,1]
- C1521725
- UMLS CUI [1,2]
- C0009488
- UMLS CUI [2,1]
- C0027853
- UMLS CUI [2,2]
- C1704258
- UMLS CUI [3,1]
- C0027853
- UMLS CUI [3,2]
- C3887504
Beschrijving
Burden of Care to Patient
Alias
- UMLS CUI-1
- C0087111
- UMLS CUI-2
- C2828008
Beschrijving
Inclusion Criteria: All patients Timing: Ongoing Data Source: Administrative Type: Numerical Response Options: Numerical value
Datatype
integer
Alias
- UMLS CUI [1,1]
- C0237753
- UMLS CUI [1,2]
- C0586344
- UMLS CUI [1,3]
- C0749794
Beschrijving
Inclusion Criteria: All patients Timing: Ongoing Data Source: Administrative Type: Numerical Response Options: Numerical value
Datatype
integer
Maateenheden
- days
Alias
- UMLS CUI [1,1]
- C0019994
- UMLS CUI [1,2]
- C0023303
Beschrijving
Inclusion Criteria: All patients Timing: Ongoing Data Source: Administrative Type: Numerical Response Options: Numerical value
Datatype
integer
Maateenheden
- days
Alias
- UMLS CUI [1,1]
- C1444754
- UMLS CUI [1,2]
- C0034991
- UMLS CUI [1,3]
- C0332282
- UMLS CUI [1,4]
- C0032790
Beschrijving
Inclusion Criteria: All patients Timing: Ongoing Data Source: Administrative Type: Numerical Response Options: Numerical value
Datatype
integer
Alias
- UMLS CUI [1,1]
- C0600290
- UMLS CUI [1,2]
- C3854240
Beschrijving
Degree of Health
Alias
- UMLS CUI-1
- C0018759
Beschrijving
Note: changes have been made to the original format. In the original version of the standard set you can find items for each the right and the left affected side. In this version of the standard set there is only the general wording. Fill in for each side affected. Inclusion Criteria: All patients Timing: On referral Data Source: Clinical Type: Single answer
Datatype
integer
Alias
- UMLS CUI [1,1]
- C3166323
- UMLS CUI [1,2]
- C0302142
Beschrijving
Inclusion Criteria: 6 months - age 2 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer
Datatype
integer
Alias
- UMLS CUI [1,1]
- C0517085
- UMLS CUI [1,2]
- C0205091
Beschrijving
Inclusion Criteria: 6 months - age 2 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer
Datatype
integer
Alias
- UMLS CUI [1,1]
- C0517085
- UMLS CUI [1,2]
- C0205090
Beschrijving
Inclusion Criteria: 6 months - age 2 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer
Datatype
integer
Alias
- UMLS CUI [1,1]
- C0205093
- UMLS CUI [1,2]
- C0517085
- UMLS CUI [1,3]
- C0205091
Beschrijving
Inclusion Criteria: 6 months - age 2 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer
Datatype
integer
Alias
- UMLS CUI [1,1]
- C0205093
- UMLS CUI [1,2]
- C0517085
- UMLS CUI [1,3]
- C0205090
Beschrijving
Inclusion Criteria: 6 months - age 2 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer
Datatype
integer
Alias
- UMLS CUI [1,1]
- C0085732
- UMLS CUI [1,2]
- C1524063
- UMLS CUI [1,3]
- C0556963
- UMLS CUI [1,4]
- C0205091
Beschrijving
Inclusion Criteria: 6 months - age 2 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer
Datatype
integer
Alias
- UMLS CUI [1,1]
- C0085732
- UMLS CUI [1,2]
- C1524063
- UMLS CUI [1,3]
- C0556963
- UMLS CUI [1,4]
- C0205090
Beschrijving
Inclusion Criteria: 6 months - age 2 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer
Datatype
integer
Alias
- UMLS CUI [1,1]
- C0562172
- UMLS CUI [1,2]
- C0205197
- UMLS CUI [1,3]
- C0175566
- UMLS CUI [1,4]
- C0205091
Beschrijving
Inclusion Criteria: 6 months - age 2 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer
Datatype
integer
Alias
- UMLS CUI [1,1]
- C0562172
- UMLS CUI [1,2]
- C0205197
- UMLS CUI [1,3]
- C0175566
- UMLS CUI [1,4]
- C0205090
Beschrijving
Inclusion Criteria: 6 months - age 2 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer
Datatype
integer
Alias
- UMLS CUI [1,1]
- C0562119
- UMLS CUI [1,2]
- C0205091
Beschrijving
Inclusion Criteria: 6 months - age 2 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer
Datatype
integer
Alias
- UMLS CUI [1,1]
- C0562119
- UMLS CUI [1,2]
- C0205090
Beschrijving
Inclusion Criteria: 6 months - age 2 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer
Datatype
integer
Alias
- UMLS CUI [1,1]
- C4055539
- UMLS CUI [1,2]
- C0517085
- UMLS CUI [1,3]
- C0205091
Beschrijving
Inclusion Criteria: 6 months - age 2 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer
Datatype
integer
Alias
- UMLS CUI [1,1]
- C4055539
- UMLS CUI [1,2]
- C0517085
- UMLS CUI [1,3]
- C0205090
Beschrijving
Inclusion Criteria: 6 months - age 2 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer
Datatype
integer
Alias
- UMLS CUI [1,1]
- C4055539
- UMLS CUI [1,2]
- C0040565
- UMLS CUI [1,3]
- C0205171
- UMLS CUI [1,4]
- C0018563
- UMLS CUI [1,5]
- C0205091
Beschrijving
Inclusion Criteria: 6 months - age 2 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer
Datatype
integer
Alias
- UMLS CUI [1,1]
- C4055539
- UMLS CUI [1,2]
- C0040565
- UMLS CUI [1,3]
- C0205171
- UMLS CUI [1,4]
- C0018563
- UMLS CUI [1,5]
- C0205090
Beschrijving
Inclusion Criteria: 6 months - age 2 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer
Datatype
integer
Alias
- UMLS CUI [1,1]
- C4055539
- UMLS CUI [1,2]
- C0040565
- UMLS CUI [1,3]
- C0517085
- UMLS CUI [1,4]
- C0205091
Beschrijving
Inclusion Criteria: 6 months - age 2 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer
Datatype
integer
Alias
- UMLS CUI [1,1]
- C4055539
- UMLS CUI [1,2]
- C0040565
- UMLS CUI [1,3]
- C0517085
- UMLS CUI [1,4]
- C0205090
Beschrijving
Degree of health - Goniometrie
Alias
- UMLS CUI-1
- C0018759
- UMLS CUI-2
- C1721021
Similar models
Follow-up, 6 months, 1 and 2 years - Clinical Form
- StudyEvent: ODM
C1442488 (UMLS CUI [1,2])
(Comment:en)
(Comment:en)
C0009488 (UMLS CUI [1,2])
C1298908 (UMLS CUI [2,1])
C2359476 (UMLS CUI [2,2])
C0009488 (UMLS CUI [1,2])
C3277906 (UMLS CUI [2])
C0018787 (UMLS CUI [3,1])
C1704258 (UMLS CUI [3,2])
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C1704258 (UMLS CUI [2,2])
C0042066 (UMLS CUI [3,1])
C3887504 (UMLS CUI [3,2])
C0009488 (UMLS CUI [1,2])
C0424605 (UMLS CUI [2])
C0851265 (UMLS CUI [3])
C0009488 (UMLS CUI [1,2])
C0004936 (UMLS CUI [2])
C0004930 (UMLS CUI [3])
C0009488 (UMLS CUI [1,2])
C0009450 (UMLS CUI [2])
C0040549 (UMLS CUI [3,1])
C0012634 (UMLS CUI [3,2])
C0009488 (UMLS CUI [1,2])
C0521362 (UMLS CUI [2,1])
C1704258 (UMLS CUI [2,2])
C0521362 (UMLS CUI [3,1])
C3887504 (UMLS CUI [3,2])
C0009488 (UMLS CUI [1,2])
C0026860 (UMLS CUI [2,1])
C3887504 (UMLS CUI [2,2])
C0026860 (UMLS CUI [3,1])
C1704258 (UMLS CUI [3,2])
C0009488 (UMLS CUI [1,2])
C0205394 (UMLS CUI [2,1])
C0037303 (UMLS CUI [2,2])
C0024947 (UMLS CUI [2,3])
C1704258 (UMLS CUI [2,4])
C0009488 (UMLS CUI [1,2])
C2709248 (UMLS CUI [2,1])
C1704258 (UMLS CUI [2,2])
C1709770 (UMLS CUI [3])
C0009488 (UMLS CUI [1,2])
C0279810 (UMLS CUI [2,1])
C1704258 (UMLS CUI [2,2])
C0279810 (UMLS CUI [3,1])
C3887504 (UMLS CUI [3,2])
C0009488 (UMLS CUI [1,2])
C0205470 (UMLS CUI [2,1])
C1704258 (UMLS CUI [2,2])
C0205470 (UMLS CUI [3,1])
C3887504 (UMLS CUI [3,2])
C0009488 (UMLS CUI [1,2])
C0027853 (UMLS CUI [2,1])
C1704258 (UMLS CUI [2,2])
C0027853 (UMLS CUI [3,1])
C3887504 (UMLS CUI [3,2])
C2828008 (UMLS CUI-2)
C0586344 (UMLS CUI [1,2])
C0749794 (UMLS CUI [1,3])
C0023303 (UMLS CUI [1,2])
C0034991 (UMLS CUI [1,2])
C0332282 (UMLS CUI [1,3])
C0032790 (UMLS CUI [1,4])
C3854240 (UMLS CUI [1,2])
C0302142 (UMLS CUI [1,2])
(Comment:en)
(Comment:en)
(Comment:en)
C0205091 (UMLS CUI [1,2])
(Comment:en)
(Comment:en)
C0205090 (UMLS CUI [1,2])
(Comment:en)
(Comment:en)
C0517085 (UMLS CUI [1,2])
C0205091 (UMLS CUI [1,3])
(Comment:en)
(Comment:en)
C0517085 (UMLS CUI [1,2])
C0205090 (UMLS CUI [1,3])
(Comment:en)
(Comment:en)
C1524063 (UMLS CUI [1,2])
C0556963 (UMLS CUI [1,3])
C0205091 (UMLS CUI [1,4])
(Comment:en)
(Comment:en)
C1524063 (UMLS CUI [1,2])
C0556963 (UMLS CUI [1,3])
C0205090 (UMLS CUI [1,4])
(Comment:en)
(Comment:en)
C0205197 (UMLS CUI [1,2])
C0175566 (UMLS CUI [1,3])
C0205091 (UMLS CUI [1,4])
(Comment:en)
(Comment:en)
C0205197 (UMLS CUI [1,2])
C0175566 (UMLS CUI [1,3])
C0205090 (UMLS CUI [1,4])
(Comment:en)
(Comment:en)
C0205091 (UMLS CUI [1,2])
(Comment:en)
(Comment:en)
C0205090 (UMLS CUI [1,2])
(Comment:en)
(Comment:en)
C0517085 (UMLS CUI [1,2])
C0205091 (UMLS CUI [1,3])
(Comment:en)
(Comment:en)
C0517085 (UMLS CUI [1,2])
C0205090 (UMLS CUI [1,3])
(Comment:en)
(Comment:en)
C0040565 (UMLS CUI [1,2])
C0205171 (UMLS CUI [1,3])
C0018563 (UMLS CUI [1,4])
C0205091 (UMLS CUI [1,5])
(Comment:en)
(Comment:en)
C0040565 (UMLS CUI [1,2])
C0205171 (UMLS CUI [1,3])
C0018563 (UMLS CUI [1,4])
C0205090 (UMLS CUI [1,5])
(Comment:en)
(Comment:en)
C0040565 (UMLS CUI [1,2])
C0517085 (UMLS CUI [1,3])
C0205091 (UMLS CUI [1,4])
(Comment:en)
(Comment:en)
C0040565 (UMLS CUI [1,2])
C0517085 (UMLS CUI [1,3])
C0205090 (UMLS CUI [1,4])
(Comment:en)
(Comment:en)
C1721021 (UMLS CUI-2)