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ICHOM Colorectal Cancer - Patient-reported Form (Baseline, 6 months and annually post-treatment)

- 30-04-20 - 1 Formulier, 2 Itemgroepen, 10 Data-elementen, 1 Taal
Itemgroepen: Administrative Data, Degree of health
COLORECTAL CANCER DATA COLLECTION Version 1.1.2 Revised: November 6th, 2017 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. Conditions: All patients with newly pathologically diagnosed invasive colorectal cancer (stage I-IV) Excluded Conditions: Non-adenocarcinoma, non-primary colorectal tumors and patients with recurrent disease at baseline will be excluded. Treatment Approaches: Surgery | Radiotherapy | Chemotherapy | Targeted Therapy In this standard set (parts of) the following questionnaires/scores are used: European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30): Due to the need for a license, the EORTC QLQ-C30 questions are not included in this version of the standard set. European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C29): Due to the need for a license, the EORTC QLQ-C29 questions are not included in this version of the standard set. Memorial Sloan-Kettering Cancer Center (MSKCC) Bowel Function Instrument: Only 4 of the items used. According to ICHOM it is free to use for all health care organizations and no license is needed. Temple, L., Bacik, J., Savatta, S. et al. The Development of a Validated Instrument to Evaluate Bowel Function After Sphincter-Preserving Surgery for Rectal Cancer. Dis Colon Rectum (2005) 48: 1353. European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-LMC21): A license is needed for use of this questionnaire as well, however only one question is used. ICHOM was supported by Alliance of Dedicated Cancer Centers (CZ, DICA, Bowel Cancer Australia) for this standard set. Publication: Zerillo JA, Schouwenburg MG, van Bommel ACM, et al. An International Collaborative Standardizing a Comprehensive Patient-Centered Outcomes Measurement Set for Colorectal Cancer. JAMA Oncol. 2017;3(5):686–694. doi:10.1001/jamaoncol.2017.0417 For this version of the standard set, semantic annotation with UMLS CUIs has been added.

ICHOM Colorectal Cancer - 6 months post treatment Clinical Form

- 30-04-20 - 1 Formulier, 4 Itemgroepen, 39 Data-elementen, 1 Taal
Itemgroepen: Administrative Data, Treatment variables, Survival and disease control, Disutility of care
COLORECTAL CANCER DATA COLLECTION Version 1.1.2 Revised: November 6th, 2017 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. Conditions: All patients with newly pathologically diagnosed invasive colorectal cancer (stage I-IV) Excluded Conditions: Non-adenocarcinoma, non-primary colorectal tumors and patients with recurrent disease at baseline will be excluded. Treatment Approaches: Surgery | Radiotherapy | Chemotherapy | Targeted Therapy In this standard set (parts of) the following questionnaires/scores are used: European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30): Due to the need for a license, the EORTC QLQ-C30 questions are not included in this version of the standard set. European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C29): Due to the need for a license, the EORTC QLQ-C29 questions are not included in this version of the standard set. Memorial Sloan-Kettering Cancer Center (MSKCC) Bowel Function Instrument: Only 4 of the items used. According to ICHOM it is free to use for all health care organizations and no license is needed. Temple, L., Bacik, J., Savatta, S. et al. The Development of a Validated Instrument to Evaluate Bowel Function After Sphincter-Preserving Surgery for Rectal Cancer. Dis Colon Rectum (2005) 48: 1353. European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-LMC21): A license is needed for use of this questionnaire as well, however only one question is used. ICHOM was supported by Alliance of Dedicated Cancer Centers (CZ, DICA, Bowel Cancer Australia) for this standard set. Publication: Zerillo JA, Schouwenburg MG, van Bommel ACM, et al. An International Collaborative Standardizing a Comprehensive Patient-Centered Outcomes Measurement Set for Colorectal Cancer. JAMA Oncol. 2017;3(5):686–694. doi:10.1001/jamaoncol.2017.0417 For this version of the standard set, semantic annotation with UMLS CUIs has been added.

ICHOM Colorectal Cancer - Baseline Clinical Form

- 30-04-20 - 1 Formulier, 3 Itemgroepen, 33 Data-elementen, 1 Taal
Itemgroepen: Administrative Data, Baseline Clinical Factors, Baseline Treatment Factors
COLORECTAL CANCER DATA COLLECTION Version 1.1.2 Revised: November 6th, 2017 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. Conditions: All patients with newly pathologically diagnosed invasive colorectal cancer (stage I-IV) Excluded Conditions: Non-adenocarcinoma, non-primary colorectal tumors and patients with recurrent disease at baseline will be excluded. Treatment Approaches: Surgery | Radiotherapy | Chemotherapy | Targeted Therapy In this standard set (parts of) the following questionnaires/scores are used: European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30): Due to the need for a license, the EORTC QLQ-C30 questions are not included in this version of the standard set. European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C29): Due to the need for a license, the EORTC QLQ-C29 questions are not included in this version of the standard set. Memorial Sloan-Kettering Cancer Center (MSKCC) Bowel Function Instrument: Only 4 of the items used. According to ICHOM it is free to use for all health care organizations and no license is needed. Temple, L., Bacik, J., Savatta, S. et al. The Development of a Validated Instrument to Evaluate Bowel Function After Sphincter-Preserving Surgery for Rectal Cancer. Dis Colon Rectum (2005) 48: 1353. European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-LMC21): A license is needed for use of this questionnaire as well, however only one question is used. ICHOM was supported by Alliance of Dedicated Cancer Centers (CZ, DICA, Bowel Cancer Australia) for this standard set. Publication: Zerillo JA, Schouwenburg MG, van Bommel ACM, et al. An International Collaborative Standardizing a Comprehensive Patient-Centered Outcomes Measurement Set for Colorectal Cancer. JAMA Oncol. 2017;3(5):686–694. doi:10.1001/jamaoncol.2017.0417 For this version of the standard set, semantic annotation with UMLS CUIs has been added.

ICHOM Colorectal Cancer - Annual Clinical Form

- 30-04-20 - 1 Formulier, 4 Itemgroepen, 33 Data-elementen, 1 Taal
Itemgroepen: Administrative Data, Survival and disease control, Treatment variables, Quality of death
COLORECTAL CANCER DATA COLLECTION Version 1.1.2 Revised: November 6th, 2017 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. Conditions: All patients with newly pathologically diagnosed invasive colorectal cancer (stage I-IV) Excluded Conditions: Non-adenocarcinoma, non-primary colorectal tumors and patients with recurrent disease at baseline will be excluded. Treatment Approaches: Surgery | Radiotherapy | Chemotherapy | Targeted Therapy ICHOM was supported by Alliance of Dedicated Cancer Centers (CZ, DICA, Bowel Cancer Australia) for this standard set. Publication: Zerillo JA, Schouwenburg MG, van Bommel ACM, et al. An International Collaborative Standardizing a Comprehensive Patient-Centered Outcomes Measurement Set for Colorectal Cancer. JAMA Oncol. 2017;3(5):686–694. doi:10.1001/jamaoncol.2017.0417 For this version of the standard set, semantic annotation with UMLS CUIs has been added.

ICHOM Type 1 and Type 2 Diabetes in Adults - 6-monthly Characteristics, Clinical/Provider Form

- 30-04-20 - 1 Formulier, 3 Itemgroepen, 9 Data-elementen, 1 Taal
Itemgroepen: Patient ID, Clinician Reported Outcomes: Glycemic Control, Clinician Reported Outcomes: Acute Events
Type 1 and Type 2 Diabetes in Adults DATA COLLECTION Version 1.0.0 Revised February 28th, 2019 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. Conditions: Type 1 Diabetes | Type 2 Diabetes Excluded Conditions: Diabetes mellitus types other than 1 and 2 | Secondary Diabetes | Gestational Diabetes Population: Adults Aged 18 years and Above Excluded Populations: Children and Young persons below 18 years Treatment Approaches: Non-Pharmacological Therapy | Non-Insulin-based Pharmacological Therapy | Insulin-based Pharmacological Therapy This form is for documentation of characteristics to be reported every 6 months after baseline by Clinicians or Healthcare Providers. Use of the following Scores for this standard set: WHO (Five) Well-Being Index (WHO-5): The WHO-5 is free for all health care organizations, and a license is not needed. There are translations available. The total raw score, ranging from 0 to 25, is multiplied by 4 to give the final score, with 0 representing the worst imaginable well-being and 100 representing the best imaginable well-being. More information (including the WHO-5 Scoring Guide) may be found at www.who-5.org. Problem Areas in Diabetes Questionnaire (PAID): The PAID, authored by Joslin Diabetes Center (http://www.joslin.org), is the copyright of Joslin Diabetes Center (Copyright ©2000, Joslin Diabetes Center). The PAID, provided under license from Joslin Diabetes Center may not be copied, distributed or used in any way without the prior written consent of Joslin Diabetes Center. Contact Susan D. Sjostrom at Joslin Diabetes Center at: susan.sjostrom@joslin.harvard.edu for licensing details and scoring guide. Patient Health Questionnaire (PHQ-9): Copyright by Pfizer: "content found on the PHQ Screeners site is free for download and use as stated within the PHQ Screeners site", please visit http://www.phqscreeners.com/ for more information. For this standard set ICHOM was supported by Imperial College London Diabetes Centre and JDRF. Publication: Nano J, Carinci F, Okunade O, et al. A standard set of person-centred outcomes for diabetes mellitus: results of an international and unified approach. Diabetic Medicine [Internet]. [cited 2020 Mar 4];n/a(n/a). Available from: https://onlinelibrary.wiley.com/doi/abs/10.1111/dme.14286 For this version of the standard set, semantic annotation with UMLS CUIs has been added.

ICHOM Lung Cancer - Baseline - Clinical Form

- 30-04-20 - 1 Formulier, 5 Itemgroepen, 14 Data-elementen, 1 Taal
Itemgroepen: 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.

ICHOM Lung Cancer - Baseline - Patient-Reported Form

- 30-04-20 - 1 Formulier, 4 Itemgroepen, 22 Data-elementen, 1 Taal
Itemgroepen: Administrative Data, Demographic factors, Baseline Clinical 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 the Baseline - Patient-Reported 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 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.

ICHOM Heart Failure - Patient-reported Outcome

- 30-04-20 - 1 Formulier, 3 Itemgroepen, 7 Data-elementen, 1 Taal
Itemgroepen: Administrative Data, Degree of Health, Burden of Care
HEART FAILURE DATA COLLECTION Version 1.1.4 Revised October 31st, 2017 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. Conditions: Heart Failure Treatment Approaches: Pharmacotherapy | Invasive Therapy | Rehabilitation This ODM-file contains patient-reported outcome variables. It should be tracked 6-monthly for life, starting 30 days and 6 months post-index event. The collection rhythm has to be reset after an acute admission (including complications), starting anew at 30 days post-discharge and 6 months post-hospital admission, and tracked 6-monthly from then on. Use of the following Scores for this standard set: KCCQ-12: Kansas City Cardiomyopathy Questionnaire-Short Version: You can obtain a license to use this instrument at your institution by visiting http://cvoutcomes.org/licenses NYHA – New York Heart Association Functional Classification: The NYHA is free for all health care organizations, and a license is not needed. PROMIS Physical Function Short Form 4a – Patient-Reported Outcome Measurement Information System: PROMIS Physical Function is free for all health care organizations, and a license is not needed. For more information, please visit http://www.healthmeasures.net/explore-measurement-systems/promis/obtain-administer-measures . 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. Patient Health Questionnaire (PHQ-2): Copyright by Pfizer: "content found on the PHQ Screeners site is free for download and use as stated within the PHQ Screeners site, please visit http://www.phqscreeners.com/ for more information. ICHOM was supported for the Heart Failure Standard Set by GIG Cymru NHS Wales, American Heart Association, British Heart Foundation, Heart Failure Association of the ESC and European Society of Cardiology. Publication: Burns DJP, Arora J, Okunade O, Beltrame JF, Bernardez-Pereira S, Crespo-Leiro MG, et al. International Consortium for Health Outcomes Measurement (ICHOM): Standardized Patient-Centered Outcomes Measurement Set for Heart Failure Patients. JACC: Heart Failure. 2020 Mar 1;8(3):212–22. For this version of the standard set, semantic annotation with UMLS CUIs has been added.

ICHOM Heart Failure - Clinician-reported Outcome

- 30-04-20 - 1 Formulier, 6 Itemgroepen, 46 Data-elementen, 1 Taal
Itemgroepen: Administrative Data, Baseline health status, Treatment variables, Degree of Health, Burden of Care, Mortality
HEART FAILURE DATA COLLECTION Version 1.1.4 Revised October 31st, 2017 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. Conditions: Heart Failure Treatment Approaches: Pharmacotherapy | Invasive Therapy | Rehabilitation This ODM-file contains clinician-reported outcome variables. It should be tracked 6-monthly for life, starting 30 days and 6 months post-index event. The collection rhythm has to be reset in case of an acute admission (including complications): It should be collected during the acute admission, 30 days post-discharge, 6 months following last admission and 6 monthly from then on. Use of the following Scores for this standard set: KCCQ-12: Kansas City Cardiomyopathy Questionnaire-Short Version: You can obtain a license to use this instrument at your institution by visiting http://cvoutcomes.org/licenses NYHA – New York Heart Association Functional Classification: The NYHA is free for all health care organizations, and a license is not needed. PROMIS Physical Function Short Form 4a – Patient-Reported Outcome Measurement Information System: PROMIS Physical Function is free for all health care organizations, and a license is not needed. For more information, please visit http://www.healthmeasures.net/explore-measurement-systems/promis/obtain-administer-measures . 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. Patient Health Questionnaire (PHQ-2): Copyright by Pfizer: "content found on the PHQ Screeners site is free for download and use as stated within the PHQ Screeners site, please visit http://www.phqscreeners.com/ for more information. ICHOM was supported for the Heart Failure Standard Set by GIG Cymru NHS Wales, American Heart Association, British Heart Foundation, Heart Failure Association of the ESC and European Society of Cardiology. Publication: Burns DJP, Arora J, Okunade O, Beltrame JF, Bernardez-Pereira S, Crespo-Leiro MG, et al. International Consortium for Health Outcomes Measurement (ICHOM): Standardized Patient-Centered Outcomes Measurement Set for Heart Failure Patients. JACC: Heart Failure. 2020 Mar 1;8(3):212–22. For this version of the standard set, semantic annotation with UMLS CUIs has been added.

ICHOM Localized Prostate Cancer - Patient-Reported Form (Questionnaires)

- 30-04-20 - 1 Formulier, 3 Itemgroepen, 35 Data-elementen, 1 Taal
Itemgroepen: Patient ID, EPIC-26, Libido Questions
LOCALIZED PROSTATE CANCER DATA COLLECTION Version 2.0.5 Revised: April 7th , 2017 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. Conditions: Localized prostate cancer Treatment Approaches: Active Surveillance | Watchful Waiting | Radical Prostatectomy* | External Beam Radiation Therapy* | Androgen Deprivation Therapy (ADT)* | Focal Therapy* | Other* * These should also be collected as salvage treatments where necessary This ODM-file contains Patient-reported Health Status. To be used before treatment, 6 months after treatment and annually up to ten years after treatment. Surveys used: Expanded Prostate Cancer Index Composite (EPIC-26): The EPIC-26 is free for all health care organizations, and a license is not needed. The scoring guide may be found at http://www.med.umich.edu/urology/research/EPIC/EPIC-26-Scoring-1.2007.pdf ; Wei J, Dunn R, Litwin M, Sandler H, and Sanda M. "Development and Validation of the Expanded Prostate Cancer Index Composite (EPIC) for Comprehensive Assessment of Health-Related Quality of Life in Men with Prostate Cancer", Urology. 56: 899-905, 2000. For registries choosing to implement the EPIC-CP rather than the EPIC-26, we recommend using the same variable IDs as the corresponding EPIC-26 questions. This means that only questions 2, 3, 4a, 4b, 4d, 4e, 5, 6e, 6b, 7, 8b, 9, 12, 13a, 13c, and 13d of the EPIC-26 are administered. Utilization of Sexual Medications/Devices: The Utilization of Sexual Medications/Devices is free for all health care organizations, and a license is not needed (according to ICHOM). This standard set uses questions 2 and 3 a-e. Refer to http://dx.doi.org/10.1016/j.urology.2006.01.077 for more information European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ- PR25): The EORTC QLQ-PR25 is free for all health care organizations, but a license is needed for use. Therefore it will not be integrated verbatim in this Version of the questionnaire. This standard set uses only question 50. For more information, please visit http://groups.eortc.be/qol/eortc-qlq-c30 . ICHOM was supported for the Localized Prostate Cancer Standard Set by the Movember Foundation. Publication: Martin NE, Massey L, Stowell C, et al. Defining a standard set of patient-centered outcomes for men with localized prostate cancer. Eur Urol. 2015;67(3):460‐467. doi:10.1016/j.eururo.2014.08.075 For this version of the standard set, semantic annotation with UMLS CUIs has been added.

ICHOM Inflammatory Arthritis - Patient-reported Form

- 30-04-20 - 1 Formulier, 2 Itemgroepen, 26 Data-elementen, 1 Taal
Itemgroepen: Administrative Data, Patient-Reported Health and Wellbeing
INFLAMMATORY ARTHRITIS DATA COLLECTION Version 1.0.0 Revised: April 27 th, 2018 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. Conditions: Rheumatoid Arthritis | Psoriatic Arthritis | Ankylosing Spondylitis | Juvenile Idiopathic Arthritis This ODM-file contains Patient-reported Variables to be administered at baseline visit and annually. The following scores are the ones that are integrated into the standard set. There are alternatives for each category: see questionnaire or data collection guide. PAIN: - Numerical Rating Scale (Adult/Paediatric) FATIGUE - Numerical rating Scale (Adult/Paediatric) ACTIVITY LIMITATION: - HAQ-II* (Adult): copyright FORWARD-The National Data Bank for Rheumatic Diseases, arthritis-research.org ; http://bit.ly/HAQIIIA ; Wolfe F, Michaud K, Pincus T. Development and validation of the health assessment questionnaire II: a revised version of the health assessment questionnaire. Arthritis & Rheumatism. 2004;50(10):3296-305. OVERALL EMOTIONAL AND PHYSICAL HEALTH IMPACT - Numerical rating scale (Adult/Paediatric) WORK/SCHOOL/HOUSEWORK ABILITY AND PRODUCTIVITY: - WPAI (Adult): reillyassociates.net/WPAI_General.html, they ask to inform them about publication or presentation of WPAI-data ICHOM was supported for the Inflammatory Arthritis Standard Set by Santeon, Arthritis Research UK, TiH Transparency in Healthcare, Maasstad Ziekenhuis, Karolinska Universitetssjukhuset and Sheba Academic Medical Center Hospital. Publication: Oude Voshaar MAH, Das Gupta Z, Bijlsma JWJ, et al. International Consortium for Health Outcome Measurement Set of Outcomes That Matter to People Living With Inflammatory Arthritis: Consensus From an International Working Group. Arthritis Care Res (Hoboken). 2019;71(12):1556‐1565. doi:10.1002/acr.23799 For this version of the standard set, semantic annotation with UMLS CUIs has been added.

ICHOM Inflammatory Arthritis - Baseline and 6-monthly/annually Clinical Form

- 30-04-20 - 1 Formulier, 2 Itemgroepen, 4 Data-elementen, 1 Taal
Itemgroepen: Administrative Data, Treatment-Specific
INFLAMMATORY ARTHRITIS DATA COLLECTION Version 1.0.0 Revised: April 27 th, 2018 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. Conditions: Rheumatoid Arthritis | Psoriatic Arthritis | Ankylosing Spondylitis | Juvenile Idiopathic Arthritis This ODM-file contains Clinical Variables to be administered at baseline visit and every 6 months if the disease is active or annually if the disease is in remission. The following scores are the ones that are integrated into the standard set. There are alternatives for each category: see questionnaire or data collection guide. PAIN: - Numerical Rating Scale (Adult/Paediatric) FATIGUE - Numerical rating Scale (Adult/Paediatric) ACTIVITY LIMITATION: - HAQ-II* (Adult): copyright FORWARD-The National Data Bank for Rheumatic Diseases, arthritis-research.org ; http://bit.ly/HAQIIIA ; Wolfe F, Michaud K, Pincus T. Development and validation of the health assessment questionnaire II: a revised version of the health assessment questionnaire. Arthritis & Rheumatism. 2004;50(10):3296-305. OVERALL EMOTIONAL AND PHYSICAL HEALTH IMPACT - Numerical rating scale (Adult/Paediatric) WORK/SCHOOL/HOUSEWORK ABILITY AND PRODUCTIVITY: - WPAI (Adult): reillyassociates.net/WPAI_General.html, they ask to inform them about publication or presentation of WPAI-data ICHOM was supported for the Inflammatory Arthritis Standard Set by Santeon, Arthritis Research UK, TiH Transparency in Healthcare, Maasstad Ziekenhuis, Karolinska Universitetssjukhuset, and Sheba Academic Medical Center Hospital. Publication: Oude Voshaar MAH, Das Gupta Z, Bijlsma JWJ, et al. International Consortium for Health Outcome Measurement Set of Outcomes That Matter to People Living With Inflammatory Arthritis: Consensus From an International Working Group. Arthritis Care Res (Hoboken). 2019;71(12):1556‐1565. doi:10.1002/acr.23799 For this version of the standard set, semantic annotation with UMLS CUIs has been added.

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