ID
40678
Description
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/ Notice: This work was conducted using resources from ICHOM, the International Consortium for Health Outcomes Measurement (www.ICHOM.org). The content is solely the responsibility of the authors and does not necessarily represent the official views of ICHOM. 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. For this version of the standard set, semantic annotation with UMLS CUIs has been added.
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Keywords
Versions (3)
- 10/12/19 10/12/19 -
- 10/23/19 10/23/19 - Sarah Riepenhausen
- 4/30/20 4/30/20 - Sarah Riepenhausen
Copyright Holder
ICHOM
Uploaded on
April 30, 2020
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License
Creative Commons BY-NC 4.0
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ICHOM Congenital Upper Limb Anomalies
Follow-up, 6 months, 1 and 2 years - Clinical Form
- StudyEvent: ODM
Description
Clinical Status
Alias
- UMLS CUI-1
- C0449440
Description
Inclusion Criteria: All patients Timing: On all forms Data Source: Clinical Type: Single answer
Data type
integer
Alias
- UMLS CUI [1]
- C0009488
Description
Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinical Type: Multiple answer Separate multiple entries with ";"
Data type
boolean
Alias
- UMLS CUI [1,1]
- C1521725
- UMLS CUI [1,2]
- C0009488
- UMLS CUI [2,1]
- C1298908
- UMLS CUI [2,2]
- C2359476
Description
Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinical Type: Multiple answer Separate multiple entries with ";"
Data type
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
Description
Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinical Type: Multiple answer Separate multiple entries with ";"
Data type
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
Description
Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinical Type: Multiple answer Separate multiple entries with ";"
Data type
boolean
Alias
- UMLS CUI [1,1]
- C1521725
- UMLS CUI [1,2]
- C0009488
- UMLS CUI [2]
- C0424605
- UMLS CUI [3]
- C0851265
Description
Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinical Type: Multiple answer Separate multiple entries with ";"
Data type
boolean
Alias
- UMLS CUI [1,1]
- C1521725
- UMLS CUI [1,2]
- C0009488
- UMLS CUI [2]
- C0004936
- UMLS CUI [3]
- C0004930
Description
Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinical Type: Multiple answer Separate multiple entries with ";"
Data type
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
Description
Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinical Type: Multiple answer Separate multiple entries with ";"
Data type
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
Description
Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinical Type: Multiple answer Separate multiple entries with ";"
Data type
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
Description
Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinical Type: Multiple answer Separate multiple entries with ";"
Data type
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
Description
Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinical Type: Multiple answer Separate multiple entries with ";"
Data type
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
Description
Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinical Type: Multiple answer Separate multiple entries with ";"
Data type
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
Description
Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinical Type: Multiple answer Separate multiple entries with ";"
Data type
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
Description
Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms Data Source: Clinical Type: Multiple answer Separate multiple entries with ";"
Data type
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
Description
Burden of Care to Patient
Alias
- UMLS CUI-1
- C0087111
- UMLS CUI-2
- C2828008
Description
Inclusion Criteria: All patients Timing: Ongoing Data Source: Administrative Type: Numerical Response Options: Numerical value
Data type
integer
Alias
- UMLS CUI [1,1]
- C0237753
- UMLS CUI [1,2]
- C0586344
- UMLS CUI [1,3]
- C0749794
Description
Inclusion Criteria: All patients Timing: Ongoing Data Source: Administrative Type: Numerical Response Options: Numerical value
Data type
integer
Measurement units
- days
Alias
- UMLS CUI [1,1]
- C0019994
- UMLS CUI [1,2]
- C0023303
Description
Inclusion Criteria: All patients Timing: Ongoing Data Source: Administrative Type: Numerical Response Options: Numerical value
Data type
integer
Measurement units
- days
Alias
- UMLS CUI [1,1]
- C1444754
- UMLS CUI [1,2]
- C0034991
- UMLS CUI [1,3]
- C0332282
- UMLS CUI [1,4]
- C0032790
Description
Inclusion Criteria: All patients Timing: Ongoing Data Source: Administrative Type: Numerical Response Options: Numerical value
Data type
integer
Alias
- UMLS CUI [1,1]
- C0600290
- UMLS CUI [1,2]
- C3854240
Description
Degree of Health
Alias
- UMLS CUI-1
- C0018759
Description
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
Data type
integer
Alias
- UMLS CUI [1,1]
- C3166323
- UMLS CUI [1,2]
- C0302142
Description
Inclusion Criteria: 6 months - age 2 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer
Data type
integer
Alias
- UMLS CUI [1,1]
- C0517085
- UMLS CUI [1,2]
- C0205091
Description
Inclusion Criteria: 6 months - age 2 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer
Data type
integer
Alias
- UMLS CUI [1,1]
- C0517085
- UMLS CUI [1,2]
- C0205090
Description
Inclusion Criteria: 6 months - age 2 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer
Data type
integer
Alias
- UMLS CUI [1,1]
- C0205093
- UMLS CUI [1,2]
- C0517085
- UMLS CUI [1,3]
- C0205091
Description
Inclusion Criteria: 6 months - age 2 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer
Data type
integer
Alias
- UMLS CUI [1,1]
- C0205093
- UMLS CUI [1,2]
- C0517085
- UMLS CUI [1,3]
- C0205090
Description
Inclusion Criteria: 6 months - age 2 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer
Data type
integer
Alias
- UMLS CUI [1,1]
- C0562142
- UMLS CUI [1,2]
- C0205091
Description
Inclusion Criteria: 6 months - age 2 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer
Data type
integer
Alias
- UMLS CUI [1,1]
- C0562142
- UMLS CUI [1,2]
- C0205090
Description
Inclusion Criteria: 6 months - age 2 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer
Data type
integer
Alias
- UMLS CUI [1,1]
- C0562172
- UMLS CUI [1,2]
- C0205197
- UMLS CUI [1,3]
- C0175566
- UMLS CUI [1,4]
- C0205091
Description
Inclusion Criteria: 6 months - age 2 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer
Data type
integer
Alias
- UMLS CUI [1,1]
- C0562172
- UMLS CUI [1,2]
- C0205197
- UMLS CUI [1,3]
- C0175566
- UMLS CUI [1,4]
- C0205090
Description
Inclusion Criteria: 6 months - age 2 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer
Data type
integer
Alias
- UMLS CUI [1,1]
- C0562119
- UMLS CUI [1,2]
- C0205091
Description
Inclusion Criteria: 6 months - age 2 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer
Data type
integer
Alias
- UMLS CUI [1,1]
- C0562119
- UMLS CUI [1,2]
- C0205090
Description
Inclusion Criteria: 6 months - age 2 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer
Data type
integer
Alias
- UMLS CUI [1,1]
- C4055539
- UMLS CUI [1,2]
- C0517085
- UMLS CUI [1,3]
- C0205091
Description
Inclusion Criteria: 6 months - age 2 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer
Data type
integer
Alias
- UMLS CUI [1,1]
- C4055539
- UMLS CUI [1,2]
- C0517085
- UMLS CUI [1,3]
- C0205090
Description
Inclusion Criteria: 6 months - age 2 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer
Data type
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
Description
Inclusion Criteria: 6 months - age 2 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer
Data type
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
Description
Inclusion Criteria: 6 months - age 2 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer
Data type
integer
Alias
- UMLS CUI [1,1]
- C4055539
- UMLS CUI [1,2]
- C0040565
- UMLS CUI [1,3]
- C0517085
- UMLS CUI [1,4]
- C0205091
Description
Inclusion Criteria: 6 months - age 2 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer
Data type
integer
Alias
- UMLS CUI [1,1]
- C4055539
- UMLS CUI [1,2]
- C0040565
- UMLS CUI [1,3]
- C0517085
- UMLS CUI [1,4]
- C0205090
Description
Degree of health - Goniometrie
Alias
- UMLS CUI-1
- C0018759
- UMLS CUI-2
- C1721021
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