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Table of contents
  1. 1. Clinical Trial
  2. 2. Routine Documentation
  3. 3. Registry/Cohort Study
  4. 4. Quality Assurance
  5. 5. Data Standard
  6. 6. Patient-Reported Outcome
  7. 7. Medical Specialty
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- 6/18/19 - 1 form, 8 itemgroups, 70 items, 1 language
Itemgroups: Administrative Data, Demographic factors, Health status, Prior Treatment, Symptom Burden, Functioning, Recovery Speed and Health Sustainability, Other
ICHOM Depression and Anxiety data collection Version 2.3.2 Revised: August 10th, 2018 International Consortium for Health Outcomes Measurement (ICHOM), Source: http://www.ichom.org/ For Depression and Anxiety, the following conditions and treatment approaches (or interventions) are covered by our Standard Set. This document contains the Baseline - Patient-reported Form. It has to be filled in at Baseline(Treatment begin). Condition: Depression: Major Depressive Disorder | Dysthymia | Depressive Adaptive/Adjustment Disorder | Depressive Disorder - NOS Anxiety: Generalized Anxiety Disorder | Phobic Disorder | Agoraphobia | Post-Traumatic Stress Disorder | Panic Disorder | Obsessive-Compulsive Disorder Treatment Approaches : Psychopharmacotherapy | Psychotherapy | Lifestyle Interventions | Self-Guided Help | Other Forms of Therapy Collecting Clinician and Patient-Reported Outcome Measures: PHQ-9 (Patient Health Questionnaire). https://www.phqscreeners.com/ Pfizer: All PHQ, GAD-7 screeners and translations are downloadable from this website and no permission is required to reproduce, translate, display or distribute them. GAD-7 (Generalized Anxiety Disorder). https://www.phqscreeners.com/ Pfizer: All PHQ, GAD-7 screeners and translations are downloadable from this website and no permission is required to reproduce, translate, display or distribute them. (and all other GAD or PHQ screeners); Pfizer owner, authors: Drs. Spitzer, Williams and Kroenke SPIN (Social Phobia Inventory ), MIA (Mobility Inventory for Agoraphobia), IES-R (Impact of Event Scale - Revised for Post-traumatic Stress Disorder), PDSS-SR (Panic Disorder Severity Scale), OCI-R (Obsessive-Compulsive Inventory). As permission for use has to be obtained for all of these questionnaires from the copyright holder, only the total score will be included in this version of the standard set. WHODAS 2.0 (World Health Organization Disability Assessment Schedule 2.0). As there is a license needed for use of this questionnaire, only the total score will be included in this version oft he standard set. MOS-SSS (Medical Outcomes Study: Social Support Survey). There is no license or permission needed for use. https://www.rand.org/health-care/surveys_tools/mos/social-support.html This Standard set of ICHOM was supported by the Douglas mental health university institute, Charité Universitätsmedizin Berlin, Stichting benchmark GGC.
- 6/17/19 - 1 form, 7 itemgroups, 31 items, 1 language
Itemgroups: Administrative Data, Demographics, Baseline clinical factors, Explanatory variable, OAB symptom severity and burden, Health Related Quality of Life, Sexual function
ICHOM Overactive bladder data collection Version 1.2.2 Revised: April 10th, 2017 International Consortium for Health Outcomes Measurement (ICHOM), Source: http://www.ichom.org/ For Overactive Bladder, the following treatment approaches (or interventions) are covered by our Standard Set. Treatment Approaches : Patient education | Behavioral modification | Pharmacological management | Intradetrusor Botox, PTNS, SNS | Surgery This document contains the Female Baseline Measures form. It has to be filled in at Baseline. This document also should also be filled out repeatedly in the event of symptom recurrence. Collecting Clinician and Patient-Reported Outcome Measures: ICIQ-OAB, ICIQ-MLUTSsex and ICIQ-FLUTSsex. For all: Free for use in clinical practice, routine outcomes measurement, and clinical research. As permission from the developer is required, only the total score will be included in this version of the standard set. To obtain permission and an offical copy and scoring guide or to inquire about translations see http://www.iciq.net/userpolicy.html OAB-q SF (4-week recall). As a license is needed for use of this questionnaire, only the total score will be included in this version of the standard set. TBS. Free for use without a license. Please see Colman S et al (2008) Validation of the treatment benefit scale for assessing subjective outcomes in Treatment of Overactive Bladder. Urology 72:803-807 ICHOM's Standard set was supported by IUGA (international urogynecological association), National Association for Continence, The Canadian Continence Foundation, Continence Foundation of Australia
- 6/17/19 - 1 form, 7 itemgroups, 30 items, 1 language
Itemgroups: Administrative Data, Demographics, Baseline clinical factors, Explanatory variable, OAB symptom severity and burden, Health Related Quality of Life, Sexual function
ICHOM Overactive bladder data collection Version 1.2.2 Revised: April 10th, 2017 International Consortium for Health Outcomes Measurement (ICHOM), Source: http://www.ichom.org/ For Overactive Bladder, the following treatment approaches (or interventions) are covered by our Standard Set. Treatment Approaches : Patient education | Behavioral modification | Pharmacological management | Intradetrusor Botox, PTNS, SNS | Surgery This document contains the Male Baseline Measures form. It has to be filled in at Baseline. This document also should also be filled out repeatedly in the event of symptom recurrence. Collecting Clinician and Patient-Reported Outcome Measures: ICIQ-OAB, ICIQ-MLUTSsex and ICIQ-FLUTSsex. For all: Free for use in clinical practice, routine outcomes measurement, and clinical research. As permission from the developer is required, only the total score will be included in this version of the standard set. To obtain permission and an offical copy and scoring guide or to inquire about translations see http://www.iciq.net/userpolicy.html OAB-q SF (4-week recall). As a license is needed for use of this questionnaire, only the total score will be included in this version of the standard set. TBS. Free for use without a license. Please see Colman S et al (2008) Validation of the treatment benefit scale for assessing subjective outcomes in Treatment of Overactive Bladder. Urology 72:803-807 ICHOM's Standard set was supported by IUGA (international urogynecological association), National Association for Continence, The Canadian Continence Foundation, Continence Foundation of Australia
- 6/6/19 - 1 form, 12 itemgroups, 60 items, 1 language
Itemgroups: Administrative Data, Demographic factors, Associated clinical history, Outcome, Overall quality of life, Carer quality of life, Health-Related Quality of Life, Overall quality of wellbeing, Neuropsychiatric, Clinical Dementia Rating, Daily Living, Cognitive
ICHOM Dementia data collection Version 1.0.1 Revised: April 3rd, 2017 International Consortium for Health Outcomes Measurement (ICHOM), Source: http://www.ichom.org/ For Dementia, the following conditions are covered by the Standard Set. Condition: Alzheimer’s disease | Vascular dementia | Dementia in other diseases classified elsewhere (e.g. dementia with Lewy bodies and fronto-temporal dementia) Stages: Early | Middle | Late This document contains the Index event and Baseline - Patient/Proxy-Reported Form. It has to be filled in at baseline index event, e.g. Memory Clinic Diagnosis. Collecting Clinician and Patient-Reported Outcome Measures: Neuropsychiatric Inventory (NPI). Copyrighted, fees only for industry-sponsored research. No republishing without permission of the originator (JL Cummings, 1994). Therefore (for now) only the total score will be included in this version of the standard set. Bristol Activity Daily Living Scale (BADLS). As redistribution possibility is not yet cleared, for now only the total score will be included in this version of the standard set. Quality of Life-AD (QOL-AD). Use of the scale in clinical practice or by academic users is free as long as no funding is received from commercial users, however a license is required. Therefore only the total score score will be included in this version of the standard set. Logsdon RG, Gibbons LE, McCurry SM, Teri L. Quality of Life in Alzheimer’s disease: Patient and Caregiver Reports. Journal of Mental Health and Aging. 1999;5(1):21-32 Quality of Wellbeing Scale-Self Administered (QWB-SA). The QWB-SA may be used free of charge by non-profit organizations that provide evidence of their non-profit status and agree to provide a copy of relevant, non-identifiable project data with UCSD; Scoring instructions are provided free of charge after a signed copyright agreement is received. As https://hoap.ucsd.edu/qwb-info/NotforProfit-Copyright.pdf is the official permission site, only the total score score will be included in this version of the standard set. EuroQol-5D (EQ-5D). As a license is required for use this questionaire, only the total score will be included in this version of the standard set. Veterans RAND 12 (VR-12). As this questionaire is copyrighted and needs an user agreement for use, only the total score score will be included in this version of the standard set. Clinical Dementia Rating (CDR). This questionaire is Copyrighted.The Washington University The Charles F. and Joanne Knight Alzheimer’s Disease Research Center (Knight ADRC) holds the United States Copyright for the Clinical Dementia Rating (CDR). Therefore only the total score score will be included in this version of the standard set. Montreal Cognitive Assessment (MoCA copyrighted). For clinical and educational use, MoCA© may be used, reproduced, and distributed without permission. This Standard set was supported by the Scottish Government.
- 6/4/19 - 1 form, 10 itemgroups, 45 items, 1 language
Itemgroups: Administrative Data, Demographic factors, Baseline Clinical Factors, Associated clinical history, Medication variables, Outcome, Neuropsychiatric, Clinical Dementia Rating, Daily Living, Cognitive
ICHOM Dementia data collection Version 1.0.1 Revised: April 3rd, 2017 International Consortium for Health Outcomes Measurement (ICHOM), Source: http://www.ichom.org/ For Dementia, the following conditions are covered by the Standard Set. Condition: Alzheimer’s disease | Vascular dementia | Dementia in other diseases classified elsewhere (e.g. dementia with Lewy bodies and fronto-temporal dementia) Stages: Early | Middle | Late This document contains the Index event and Baseline - Clinical Form. It has to be filled in at baseline index event, e.g. Memory Clinic Diagnosis. Collecting Clinician and Patient-Reported Outcome Measures: Neuropsychiatric Inventory (NPI). Copyrighted, fees only for industry-sponsored research. No republishing without permission of the originator (JL Cummings, 1994). Therefore (for now) only the total score will be included in this version of the standard set. Bristol Activity Daily Living Scale (BADLS). As redistribution possibility is not yet cleared, for now only the total score will be included in this version of the standard set. Quality of Life-AD (QOL-AD). Use of the scale in clinical practice or by academic users is free as long as no funding is received from commercial users, however a license is required. Therefore only the total score score will be included in this version of the standard set. Logsdon RG, Gibbons LE, McCurry SM, Teri L. Quality of Life in Alzheimer’s disease: Patient and Caregiver Reports. Journal of Mental Health and Aging. 1999;5(1):21-32 Quality of Wellbeing Scale-Self Administered (QWB-SA). The QWB-SA may be used free of charge by non-profit organizations that provide evidence of their non-profit status and agree to provide a copy of relevant, non-identifiable project data with UCSD; Scoring instructions are provided free of charge after a signed copyright agreement is received. As https://hoap.ucsd.edu/qwb-info/NotforProfit-Copyright.pdf is the official permission site, only the total score score will be included in this version of the standard set. EuroQol-5D (EQ-5D). As a license is required for use this questionaire, only the total score will be included in this version of the standard set. Veterans RAND 12 (VR-12). As this questionaire is copyrighted and needs an user agreement for use, only the total score score will be included in this version of the standard set. Clinical Dementia Rating (CDR). This questionaire is Copyrighted.The Washington University The Charles F. and Joanne Knight Alzheimer’s Disease Research Center (Knight ADRC) holds the United States Copyright for the Clinical Dementia Rating (CDR). Therefore only the total score score will be included in this version of the standard set. Montreal Cognitive Assessment (MoCA copyrighted). For clinical and educational use, MoCA© may be used, reproduced, and distributed without permission. This Standard set was supported by the Scottish Government.
- 6/4/19 - 1 form, 4 itemgroups, 26 items, 1 language
Itemgroups: Administrative Data, Demographic factors, Clinical Factors, Patient-reported health status
ICHOM Hypertension in low- and middle-income countries data collection Version 1.0.0 Revised: November 3rd, 2017 International Consortium for Health Outcomes Measurement (ICHOM), Source: http://www.ichom.org/ The following condition and treatment approaches (or interventions) are covered by our Standard Set. Condition: Hypertension (ICD-10: I10) Treatment Approaches: Pharmacological and Non-Pharmacological Collecting Patient-Reported Outcome Measures: Survey Used: EuroQol-5D-3L (EQ-5D-3L). As a licence is needed for use of EQ-5D-3L questionnaires, the actual questions are not part of this version of the standard set. For licensing information see: https://euroqol.org/support/how-to-obtain-eq-5d/ This document contains the Baseline - Patient-reported form. It has to be filled in for patient's entry into study. PROMIS Single Question on erectile Dysfunction. Free for use in clinical practice. 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. Beliefs about Medication Questionnaire (BMQ)-Specific: Copyrighted, permission to use the scale can be obtained from Professor Rob Horne’s research team. The scoring guide can be found in the original validation article: Horne et al. (1999) The beliefs about medicines questionnaire: The development and evaluation of a new method for assessing the cognitive representation of medication. Psychology & Health, 14:1. Hill-Bone Compliance to High Blood Pressure Therapy Scale - South Africa Version: Permission to use the scale can be obtained from Estelle V. Lambert’s research team, The scoring guide can be found in the original validation article: Lambert, E.V. et al. (2006) Cross-Cultural Validation of the Hill-Bone Compliance To High Blood Pressure Therapy Scale in a South African, Primary Healthcare Setting. Ethnicity and Disease, 16. WHO STEPS Instrument. Free for use in clinical practice and a license is not required. http://www.who.int/chp/steps/instrument/en/ International Physical Activity Questionnaire(IPAQ)-Short Form: Publically available, open access, and no permissions are required to use it. https://sites.google.com/site/theipaq/ Alternative Quality of Life Surveys: PROMIS Global-10 Free for use in clinical practice. 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. Veteran’s Rand 12-Item Health Survey (VR-12). Free for all health care organizations, license required and can be requested at: http://bit.ly/2ir84sG. As a license is needed, the actual questions are not part of this version of the standard set. 12-Item Short Form Survey (SF-12). As a license is needed for use of SF-12 questionaires, the actual questions are not part of this version of the standard set. For more information see: http://bit.ly/2AcNLrme This Standard set was supported by the Novartis Foundation.
- 6/4/19 - 1 form, 5 itemgroups, 32 items, 1 language
Itemgroups: Administrative Data, Demographic factors, Clinical Factors, Treatment variables, Survival, disease control and cardiovascular complications
ICHOM Hypertension in low- and middle-income countries data collection Version 1.0.0 Revised: November 3rd, 2017 International Consortium for Health Outcomes Measurement (ICHOM), Source: http://www.ichom.org/ The following condition and treatment approaches (or interventions) are covered by our Standard Set. Condition: Hypertension (ICD-10: I10) Treatment Approaches: Pharmacological and Non-Pharmacological Collecting Patient-Reported Outcome Measures: Survey Used: EuroQol-5D-3L (EQ-5D-3L). As a licence is needed for use of EQ-5D-3L questionnaires, the actual questions are not part of this version of the standard set. For licensing information see: https://euroqol.org/support/how-to-obtain-eq-5d/ This document contains the Baseline - Clinical Form. It has to be filled in for patient's entry into study. PROMIS Single Question on erectile Dysfunction. Free for use in clinical practice. 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. Beliefs about Medication Questionnaire (BMQ)-Specific: Copyrighted, permission to use the scale can be obtained from Professor Rob Horne’s research team. The scoring guide can be found in the original validation article: Horne et al. (1999) The beliefs about medicines questionnaire: The development and evaluation of a new method for assessing the cognitive representation of medication. Psychology & Health, 14:1. Hill-Bone Compliance to High Blood Pressure Therapy Scale - South Africa Version: Permission to use the scale can be obtained from Estelle V. Lambert’s research team, The scoring guide can be found in the original validation article: Lambert, E.V. et al. (2006) Cross-Cultural Validation of the Hill-Bone Compliance To High Blood Pressure Therapy Scale in a South African, Primary Healthcare Setting. Ethnicity and Disease, 16. WHO STEPS Instrument. Free for use in clinical practice and a license is not required. http://www.who.int/chp/steps/instrument/en/ International Physical Activity Questionnaire(IPAQ)-Short Form: Publically available, open access, and no permissions are required to use it. https://sites.google.com/site/theipaq/ Alternative Quality of Life Surveys: PROMIS Global-10 Free for use in clinical practice. 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. Veteran’s Rand 12-Item Health Survey (VR-12). Free for all health care organizations, license required and can be requested at: http://bit.ly/2ir84sG. As a license is needed, the actual questions are not part of this version of the standard set. 12-Item Short Form Survey (SF-12). As a license is needed for use of SF-12 questionaires, the actual questions are not part of this version of the standard set. For more information see: http://bit.ly/2AcNLrme This Standard set was supported by the Novartis Foundation.
- 5/22/19 - 1 form, 9 itemgroups, 64 items, 1 language
Itemgroups: Administrative Data, Demographic factors, Case-mix factors, Treatment Variables, Functional status, Pain, Work Status, Quality of life, General treatment outcomes
ICHOM Hip and Knee Osteoarthritis Study description: ICHOM Hip and Knee Osteoarthritis data collection Version 2.2.1 Revised: April 10th, 2017 International Consortium for Health Outcomes Measurement (ICHOM), Source: http://www.ichom.org/ For Hip and Knee Osteoarthritis, the following conditions and treatment approaches (or interventions) are covered by our Standard Set. Conditions : All patients seeking treatment for osteoarthritis of the hip or knee, whether surgical or non-surgical Treatment Approaches: Non-Surgical: Lifestyle intervention | Patient education | Physiotherapy | Walking aid or orthosis | Topical and oral medication | Intra-articular injection Surgical: Osteotomy | Joint replacement | Other forms of surgical treatment This document contains the Baseline - Patient-reported form. Data collection may begin (baseline measure) at any point in a patient’s treatment for osteoarthritis whether at diagnosis of osteoarthritis in the hip or knee, upon the start of a new osteoarthritis treatment regime, or at the time of surgery. Once data collection begins, we recommend that it continues annually for as many years as feasible. Collecting Patient-Reported Outcome Measures: Hip Disability and Osteoarthritis Outcome Score - Physical Function Shortform (HOOS-PS). http://www.koos.nu/ Knee Injury and Osteoarthritis Outcome Score - Physical Function Shortform (KOOS-PS). http://www.koos.nu/ Veterans RAND 12 (VR-12) or Short Form 12 Health Survey (SF- 12). As a request for access and an agreement to terms of use are necessary before access, the actual questions of these questionnaires are not part of this version of the standard set. EuroQol-5D descriptive system (EQ- 5D-3L) and visual analogue scale (EQ-VAS). As a license is needed for use of EuroQol questionnaires, the actual questions are not part of this version of the standard set. *For a description of an algorithm to convert between the EQ-5D-3L and SF-12, please see: Le QA. Probabilistic mapping of the health status measure SF-12 responses and EQ-5D using the US-population-based scoring models. Qual Life Res. 2014 Mar; 23(2): 459-66. Please see the above Veterans RAND website for help converting the VR-12 to the SF-12. For this standard set ICHOM was supproted by Hoag Orthopedic Institute, the Connecticut Joint Replacement Institute, and Harvard Pilgrim Health Care and Arthritis Research.
- 5/16/19 - 1 form, 5 itemgroups, 14 items, 1 language
Itemgroups: Administrative data, Demographic factors, Baseline Clinical Factors, Baseline tumor factors, Degree of health
- 5/16/19 - 1 form, 4 itemgroups, 22 items, 1 language
Itemgroups: Administrative Data, Demographic factors, Baseline Clinical factors, Degree of health