- 20-09-21 - 1 Formulaire, 5 Groupes Item, 18 Eléments de données, 1 Langue
Groupes Item: Administrative data, Demographic factors, Stroke type and severity, Vascular and systemic, Treatment/care related
ICHOM Stroke data collection Version 2.0.1 Revised: June 21th, 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 stroke, the following conditions and treatment approaches (or interventions) are covered by our Standard Set. Conditions: Patients who have been hospitalized for an index ischemic stroke (IS) or intracereberal hemorrhage (ICH). Patients with subarachnoid hemorrhage (SAH) are excluded. Inclusion of transient ischemic attack (TIA) or patients with IS or ICH who are evaluated but not hospitalized is not required. Treatment Approaches: IV Thrombolysis | Thrombectomy | Hemicraniectomy This form contains index event clinical form. The items cover the entrance into outcome tracking system for Stroke. If a second stroke occurs between discharge and the “90 day post index” collection, you should reset the measurement scale, treating them as a new patient. Questionnaires used in this standard set: PROMIS-10. It is free for all health care organizations, and a license is not needed. There are translations available for Spanish, French, German,and Dutch. As http://www.nihpromis.org is the official distribution site for PROMIS questionnaires and translations, only the total score will be included in this version of the standard set. Simplified Modified Rankin Scale Questionnaire (smRSq) – Clinician. There is no patent on thes smRSq or fee for using it in clinical practice; however Lippincott Williams & Wilkins (LWW) own the rights to the published article where the smRSq is introduced. Therefore here only the total score is included. The smRSq flow chart can be found at http://stroke.ahajournals.org/content/42/8/2276 “Simplified Modified Rankin Scale Questionnaire Reproducibility Over the Telephone and Validation With Quality of Life” Stroke 2011; 42: 2276-2279 © 2011 American Heart Association, Inc. Wolters Kluwer Health. Publication: Salinas J, Sprinkhuizen SM, Ackerson T, et al. An International Standard Set of Patient-Centered Outcome Measures After Stroke. Stroke. 2015;47(1):180–186. doi:10.1161/STROKEAHA.115.010898 For the Stroke Standard Set ICHOM was supported by the American Heart Association and the American Stroke Association. For this version of the standard set, semantic annotation with UMLS CUIs has been added.
- 30-04-20 - 1 Formulaire, 2 Groupes Item, 3 Eléments de données, 1 Langue
Groupes Item: Administrative data, Other
ICHOM Lung cancer data collection Version 2.3.1 Revised: April 10th, 2017 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 Lung Cancer, the following conditions and treatment approaches (or interventions) are covered by our Standard Set. Conditions: Small Cell and Non-Small Cell Lung Cancer Treatment Approaches: Surgery | Radiotherapy | Chemotherapy | Targeted Therapy | Immunotherapy | Other This document contains Begin of treatment - Clinical Form. Collecting Patient-Reported Outcome Measures: European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30). European Organization for Research and Treatment of Cancer Quality of Life Lung Cancer-Specific Questionnaire (EORTC QLQ-LC13). Both are free for all health care organizations, but a license is needed for use. http:// groups.eortc.be/qol/eortc-qlq-c30 is the official distribution site for EORTC QLQ-C30 and EORTC QLQ-LC13 questionnaires. Therefore only the total score will be included in this version of the standard set. Publication: Mak KS, van Bommel AC, Stowell C, et al. Defining a standard set of patient-centred outcomes for lung cancer. Eur Respir J. 2016;48(3):852–860. doi:10.1183/13993003.02049-2015 For this standard set ICHOM was supported by the Alliance of Dedicated Cancer Centers. For this version of the standard set, semantic annotation with UMLS CUIs has been added.
- 30-04-20 - 1 Formulaire, 2 Groupes Item, 2 Eléments de données, 1 Langue
Groupes Item: Administrative data, Treatment Factors
ICHOM Lung cancer data collection Version 2.3.1 Revised: April 10th, 2017 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 Lung Cancer, the following conditions and treatment approaches (or interventions) are covered by our Standard Set. Conditions: Small Cell and Non-Small Cell Lung Cancer Treatment Approaches: Surgery | Radiotherapy | Chemotherapy | Targeted Therapy | Immunotherapy | Other This document contains At time of treatment decision - Clinical Form. Collecting Patient-Reported Outcome Measures: European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30). European Organization for Research and Treatment of Cancer Quality of Life Lung Cancer-Specific Questionnaire (EORTC QLQ-LC13). Both are free for all health care organizations, but a license is needed for use. http:// groups.eortc.be/qol/eortc-qlq-c30 is the official distribution site for EORTC QLQ-C30 and EORTC QLQ-LC13 questionnaires. Therefore only the total score will be included in this version of the standard set. Publication: Mak KS, van Bommel AC, Stowell C, et al. Defining a standard set of patient-centred outcomes for lung cancer. Eur Respir J. 2016;48(3):852–860. doi:10.1183/13993003.02049-2015 For this standard set ICHOM was supported by the Alliance of Dedicated Cancer Centers. For this version of the standard set, semantic annotation with UMLS CUIs has been added.
- 30-04-20 - 1 Formulaire, 5 Groupes Item, 14 Eléments de données, 1 Langue
Groupes Item: Administrative data, Demographic factors, Baseline Clinical Factors, Baseline tumor factors, Degree of health
ICHOM Lung cancer data collection Version 2.3.1 Revised: April 10th, 2017 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 Lung Cancer, the following conditions and treatment approaches (or interventions) are covered by our Standard Set. Conditions: Small Cell and Non-Small Cell Lung Cancer Treatment Approaches: Surgery | Radiotherapy | Chemotherapy | Targeted Therapy | Immunotherapy | Other This document contains Baseline - Clinical Form. It depicts first doctor's visit. Collecting Patient-Reported Outcome Measures: European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30). European Organization for Research and Treatment of Cancer Quality of Life Lung Cancer-Specific Questionnaire (EORTC QLQ-LC13). Both are free for all health care organizations, but a license is needed for use. http:// groups.eortc.be/qol/eortc-qlq-c30 is the official distribution site for EORTC QLQ-C30 and EORTC QLQ-LC13 questionnaire. Therefore only the total score will be included in this version of the standard set. Publication: Mak KS, van Bommel AC, Stowell C, et al. Defining a standard set of patient-centred outcomes for lung cancer. Eur Respir J. 2016;48(3):852–860. doi:10.1183/13993003.02049-2015 For this standard set ICHOM was supported by the Alliance of Dedicated Cancer Centers. For this version of the standard set, semantic annotation with UMLS CUIs has been added.
- 20-09-21 - 1 Formulaire, 8 Groupes Item, 64 Eléments de données, 1 Langue
Groupes Item: Administrative data, Degree of health, Baseline tumor factors, Treatment Factors, Treatment Variables, Acute complications of treatment, Survival, Quality of death
ICHOM Lung cancer data collection Version 2.3.1 Revised: April 10th, 2017 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 Lung Cancer, the following conditions and treatment approaches (or interventions) are covered by our Standard Set. Conditions: Small Cell and Non-Small Cell Lung Cancer Treatment Approaches: Surgery | Radiotherapy | Chemotherapy | Targeted Therapy | Immunotherapy | Other This document contains Follow-up - Clinical Form. It includes different points in time: After treatment, After surgery, Update at least annually, 1 year post initiation of treatment and Tracked ongoing annually for life (when hospital is able to track this ongoing). Collecting Patient-Reported Outcome Measures: European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30). European Organization for Research and Treatment of Cancer Quality of Life Lung Cancer-Specific Questionnaire (EORTC QLQ-LC13). Both are free for all health care organizations, but a license is needed for use. http:// groups.eortc.be/qol/eortc-qlq-c30 is the official distribution site for EORTC QLQ-C30 and EORTC QLQ-LC13 questionnaires. Therefore only the total score will be included in this version of the standard set. Publication: Mak KS, van Bommel AC, Stowell C, et al. Defining a standard set of patient-centred outcomes for lung cancer. Eur Respir J. 2016;48(3):852–860. doi:10.1183/13993003.02049-2015 For this standard set ICHOM was supported by the Alliance of Dedicated Cancer Centers. For this version of the standard set, semantic annotation with UMLS CUIs has been added.
- 15-03-21 - 1 Formulaire, 6 Groupes Item, 62 Eléments de données, 1 Langue
Groupes Item: Administrative Data, Lifestyle interventions measured, Baseline health status, Health status measured at baseline, Long-term consequences of disease, Complications of treatment
ICHOM Atrial Fibrillation data collection Version 1.0.0 Published: 3rd April 2019 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. The following conditions and treatment approaches (or interventions) are covered by our Standard Set. Conditions: Atrial Fibrillation Population: An adult (≥ 18 years) diagnosed with atrial fibrillation (including symptomatic patients) Treatment approaches: Management of cardiovascular risk factors and institution of preventive therapy | Pharmacological management| Non-Pharmacological management Excluded populations: Children and Young persons below 18 years Excluded conditions: Patients diagnosed with cardiotoxic acute atrial fibrillation This document contains the Baseline – Clinical Form. It has to be filled in at index event. Collecting Patient-Reported Outcome Measure: PROMIS Global Health. As there is an official distribution site, the questions of this questionnaire will not be included in this version of the standard set. For more information see: https://bit.ly/29aOZu9 Alternatively Optum SF-12, AFEQT, AFSS or WPAI:GH may be used. Montreal Cognitive Assessment Test. For more information see: https://www.mocatest.org/ The Standard set of ICHOM was supported by the BigData@Heart organization. Publication: Seligman WH, Das-Gupta Z, Jobi-Odeneye AO, Arbelo E, Banerjee A, Bollmann A, et al. Development of an international standard set of outcome measures for patients with atrial fibrillation: a report of the International Consortium for Health Outcomes Measurement (ICHOM) atrial fibrillation working group. Eur Heart J. 2020 Jan 29; 10.1093/eurheartj/ehz871 For this version of the standard set, semantic annotation with UMLS CUIs has been added.
- 30-04-20 - 1 Formulaire, 5 Groupes Item, 36 Eléments de données, 1 Langue
Groupes Item: Administrative Data, Long-term consequences of disease, Complications of treatment, Procedure, SAE
ICHOM Atrial Fibrillation data collection Version 1.0.0 Published: 3rd April 2019 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. The following conditions and treatment approaches (or interventions) are covered by our Standard Set. Conditions: Atrial Fibrillation Population: An adult (≥ 18 years) diagnosed with atrial fibrillation (including symptomatic patients) Treatment approaches: Management of cardiovascular risk factors and institution of preventive therapy | Pharmacological management| Non-Pharmacological management Excluded populations: Children and Young persons below 18 years Excluded conditions: Patients diagnosed with cardiotoxic acute atrial fibrillation This document contains the Ongoing – Clinical Form. It has to be filled in ongoing after 6 months and annually. Collecting Patient-Reported Outcome Measure: PROMIS Global Health. As there is an official distribution site, the questions of this questionnaire will not be included in this version of the standard set. For more information see: https://bit.ly/29aOZu9 Alternatively Optum SF-12, AFEQT, AFSS or WPAI:GH may be used. Montreal Cognitive Assessment Test. For more information see: https://www.mocatest.org/ The Standard set of ICHOM was supported by the BigData@Heart organization. Publication: Seligman WH, Das-Gupta Z, Jobi-Odeneye AO, Arbelo E, Banerjee A, Bollmann A, et al. Development of an international standard set of outcome measures for patients with atrial fibrillation: a report of the International Consortium for Health Outcomes Measurement (ICHOM) atrial fibrillation working group. Eur Heart J. 2020 Jan 29; 10.1093/eurheartj/ehz871 For this version of the standard set, semantic annotation with UMLS CUIs has been added.
- 30-04-20 - 1 Formulaire, 4 Groupes Item, 37 Eléments de données, 1 Langue
Groupes Item: Administrative Data, Lifestyle interventions measured at annually, Health status measured at annually, Complications of treatment
ICHOM Atrial Fibrillation data collection Version 1.0.0 Published: 3rd April 2019 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. The following conditions and treatment approaches (or interventions) are covered by our Standard Set. Conditions: Atrial Fibrillation Population: An adult (≥ 18 years) diagnosed with atrial fibrillation (including symptomatic patients) Treatment approaches: Management of cardiovascular risk factors and institution of preventive therapy | Pharmacological management| Non-Pharmacological management Excluded populations: Children and Young persons below 18 years Excluded conditions: Patients diagnosed with cardiotoxic acute atrial fibrillation This document contains the Annual – Clinical Form. It has to be filled in annually after index event. Collecting Patient-Reported Outcome Measure: PROMIS Global Health. As there is an official distribution site, the questions of this questionnaire will not be included in this version of the standard set. For more information see: https://bit.ly/29aOZu9 Alternatively Optum SF-12, AFEQT, AFSS or WPAI:GH may be used. Montreal Cognitive Assessment Test. For more information see: https://www.mocatest.org/ The Standard set of ICHOM was supported by the BigData@Heart organization. Publication: Seligman WH, Das-Gupta Z, Jobi-Odeneye AO, Arbelo E, Banerjee A, Bollmann A, et al. Development of an international standard set of outcome measures for patients with atrial fibrillation: a report of the International Consortium for Health Outcomes Measurement (ICHOM) atrial fibrillation working group. Eur Heart J. 2020 Jan 29; 10.1093/eurheartj/ehz871 For this version of the standard set, semantic annotation with UMLS CUIs has been added.
- 30-04-20 - 1 Formulaire, 3 Groupes Item, 14 Eléments de données, 1 Langue
Groupes Item: Administrative Data, Long-term consequences of disease, Complications of treatment
ICHOM Atrial Fibrillation data collection Version 1.0.0 Published: 3rd April 2019 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. The following conditions and treatment approaches (or interventions) are covered by our Standard Set. Conditions: Atrial Fibrillation Population: An adult (≥ 18 years) diagnosed with atrial fibrillation (including symptomatic patients) Treatment approaches: Management of cardiovascular risk factors and institution of preventive therapy | Pharmacological management| Non-Pharmacological management Excluded populations: Children and Young persons below 18 years Excluded conditions: Patients diagnosed with cardiotoxic acute atrial fibrillation This document contains the 6-month - Clinical/Provider Form. It has to be filled in at the 6 month timepoints between the annually form. Collecting Patient-Reported Outcome Measure: PROMIS Global Health. As there is an official distribution site, the questions of this questionnaire will not be included in this version of the standard set. For more information see: https://bit.ly/29aOZu9 Alternatively Optum SF-12, AFEQT, AFSS or WPAI:GH may be used. Montreal Cognitive Assessment Test. For more information see: https://www.mocatest.org/ The Standard set of ICHOM was supported by the BigData@Heart organization. Publication: Seligman WH, Das-Gupta Z, Jobi-Odeneye AO, Arbelo E, Banerjee A, Bollmann A, et al. Development of an international standard set of outcome measures for patients with atrial fibrillation: a report of the International Consortium for Health Outcomes Measurement (ICHOM) atrial fibrillation working group. Eur Heart J. 2020 Jan 29; 10.1093/eurheartj/ehz871 For this version of the standard set, semantic annotation with UMLS CUIs has been added.
- 30-04-20 - 1 Formulaire, 8 Groupes Item, 35 Eléments de données, 1 Langue
Groupes Item: Administrative Data, Clinical status, Other ocular treatments, Treatment variables, Burden of treatment, Complications of treatment, Disease activity, Visual functioning and health related quality of life
ICHOM Macular Degeneration data collection Version 3.0.1 Revised: April 10th, 2017 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 Macular Degeneration, the following conditions and treatment approaches (or interventions) are covered by our Standard Set. Conditions: Neovascular Macular Degeneration Neovascular Age Related Macular Degeneration | Polypoidal Choroidal Vasculopathy | Myopic Neovascular Macular Degeneration | Other Forms of Neovascular Macular Degeneration (includes Post-Traumatic, Inflammatory, Idiopathic, Macular Telangiectasia Type 2) Non-Neovascular Age Related Macular Degeneration Treatment approaches: Intravitreal anti-VEGF treatment | Other intravitreal treatment | Photodynamic therapy | Thermal laser photocoagulation | Retinal radiation therapy | Transpupillary thermotherapy | Retinal surgical treatment This document contains the Each Clinical Visit - Clinical Form. Collecting Patient-Reported Outcome Measure: Brief Impact of Vision Impairment Questionnaire (Brief IVI): The Brief IVI includes costs for commercial use, and requires an agreement license. Therefore this questionnaire is not included in this Version of the standard set. Reference: Rodrigues IA, Sprinkhuizen SM, Barthelmes D, et al. Defining a Minimum Set of Standardized Patient-centered Outcome Measures for Macular Degeneration. American Journal of Opthalmology. 2016;168:1–12. doi: 10.1016/j.ajo.2016.04.012 The Standard set of ICHOM was supported by the WillsEye Hospital (America’s First World’s Best), Retina Suisse, St. Erik Eye Hospital, Macular Society, The Retina Society, Save sight Institute and The Macula Foundation (Preserving and Restoring Vision). For this version of the standard set, semantic annotation with UMLS CUIs has been added.
- 20-09-21 - 1 Formulaire, 5 Groupes Item, 89 Eléments de données, 1 Langue
Groupes Item: Administrative Data, Patient Demographic Factors, Family Demographic Factors, Clinical status, OMT Classification
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 This document contains the On referral - Clinical Form. It has to be filled in at Patient's entry into the set. 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.
- 30-04-20 - 1 Formulaire, 5 Groupes Item, 28 Eléments de données, 1 Langue
Groupes Item: Administrative Data, Demographics, Baseline Functional Status, Baseline clinical status, Associated clinical history
ICHOM Macular Degeneration data collection Version 3.0.1 Revised: April 10th, 2017 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 Macular Degeneration, the following conditions and treatment approaches (or interventions) are covered by our Standard Set. Conditions: Neovascular Macular Degeneration Neovascular Age Related Macular Degeneration | Polypoidal Choroidal Vasculopathy | Myopic Neovascular Macular Degeneration | Other Forms of Neovascular Macular Degeneration (includes Post-Traumatic, Inflammatory, Idiopathic, Macular Telangiectasia Type 2) Non-Neovascular Age Related Macular Degeneration Treatment approaches: Intravitreal anti-VEGF treatment | Other intravitreal treatment | Photodynamic therapy | Thermal laser photocoagulation | Retinal radiation therapy | Transpupillary thermotherapy | Retinal surgical treatment This document contains the Baseline - Clinical Form. It has to be filled in at Patient's entrance into outcome tracking system for Macular Degeneration. Collecting Patient-Reported Outcome Measure: Brief Impact of Vision Impairment Questionnaire (Brief IVI): The Brief IVI includes costs for commercial use, and requires an agreement license. Therefore this questionnaire is not included in this Version of the standard set. Reference: Rodrigues IA, Sprinkhuizen SM, Barthelmes D, et al. Defining a Minimum Set of Standardized Patient-centered Outcome Measures for Macular Degeneration. American Journal of Opthalmology. 2016;168:1–12. doi: 10.1016/j.ajo.2016.04.012 The Standard set of ICHOM was supported by the WillsEye Hospital (America’s First World’s Best), Retina Suisse, St. Erik Eye Hospital, Macular Society, The Retina Society, Save sight Institute and The Macula Foundation (Preserving and Restoring Vision). For this version of the standard set, semantic annotation with UMLS CUIs has been added.

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