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ICHOM Macular Degeneration - Each Clinical Visit - Clinical Form

- 4/30/20 - 1 form, 8 itemgroups, 35 items, 1 language
Itemgroups: 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.

ICHOM Macular Degeneration - Baseline - Clinical Form

- 4/30/20 - 1 form, 5 itemgroups, 28 items, 1 language
Itemgroups: 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.

ICHOM Macular Degeneration - Annually - Clinical Form

- 4/30/20 - 1 form, 2 itemgroups, 8 items, 1 language
Itemgroups: Administrative Data, Medical 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 Annually - Clinical Form. It has to be filled in annually from baseline. 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.

ICHOM Dementia - Annual - Clinical Form

- 4/30/20 - 1 form, 9 itemgroups, 43 items, 1 language
Itemgroups: Administrative Data, Demographic 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/ 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 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 Annual - Clinical Form. It has to be filled in annually (from baseline). 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. For this version of the standard set, semantic annotation with UMLS CUIs has been added.

ICHOM Dementia - Index event and Baseline - Clinical Form

- 4/30/20 - 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/ 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 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. For this version of the standard set, semantic annotation with UMLS CUIs has been added.

ICHOM Conditions and Treatment Approaches Covered for Stroke - Index event - Clinical

- 9/20/21 - 1 form, 5 itemgroups, 18 items, 1 language
Itemgroups: 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.

ICHOM Hypertension in low- and middle-income countries - Baseline - Clinical Form

- 4/30/20 - 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/ 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 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. Publication: Zack R, Okunade O, Olson E, et al. Improving Hypertension Outcome Measurement in Low- and Middle-Income Countries. Hypertension. 2019;73:990–997. doi: 10.1161/HYPERTENSIONAHA.118.11916 For this version of the standard set, semantic annotation with UMLS CUIs has been added.

ICHOM Hypertension in low- and middle-income countries - Annually - Clinical Form

- 4/30/20 - 1 form, 5 itemgroups, 57 items, 1 language
Itemgroups: Administrative Data, Clinical Factors, Treatment variables, Survival, disease control and cardiovascular complications, 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/ 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 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 Annually - Clinical Form. It has to be filled in one year after patient's entry into set and annually for life. 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. For this version of the standard set, semantic annotation with UMLS CUIs has been added.

ICHOM Hypertension in low- and middle-income countries - Time of/Review after clinical incident - Clinical Form

- 4/30/20 - 1 form, 2 itemgroups, 18 items, 1 language
Itemgroups: Administrative Data, 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/ 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 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 Annually - Clinical Form. It has to be filled in one year after patient's entry into set and annually for life. 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. Publication: Zack R, Okunade O, Olson E, et al. Improving Hypertension Outcome Measurement in Low- and Middle-Income Countries. Hypertension. 2019;73:990–997. doi: 10.1161/HYPERTENSIONAHA.118.11916 For this version of the standard set, semantic annotation with UMLS CUIs has been added.

ICHOM Conditions and Treatment Approaches Covered for Stroke - Follow-up - Clinical

- 4/30/20 - 1 form, 2 itemgroups, 3 items, 1 language
Itemgroups: Administrative Data, Clinician reported health status
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 Follow-up - Clinical form. The items cover Discharge +7 and 90 days post index. 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.

ICHOM Conditions and Treatment Approaches Covered for Stroke - Discharge +7 days - Clinical

- 4/30/20 - 1 form, 5 itemgroups, 11 items, 1 language
Itemgroups: Administrative Data, Treatment/care related, Treatment variables, Acute Complications of treatment, Clinician reported health status
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 Discharge +7 days - Clinical form. 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.

Maintenance of physical activity after cardiac rehabilitation (FAIR): study protocol for a feasibility trial - PATIENT CHARACTERISTICS AND OTHER OUTCOMES

- 4/7/22 - 11 forms, 1 itemgroup, 1 item, 1 language
Itemgroup: Outcomes
Adapted from the BMJopen after: Andersen RM, Skou ST, Clausen MB, et al Maintenance of physical activity after cardiac rehabilitation (FAIR): study protocol for a feasibility trial BMJ Open 2022;12:e060157. doi: 10.1136/bmjopen-2021-060157 Copyright information: © Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. http://creativecommons.org/licenses/by-nc/4.0/ Abstract Introduction To enhance health and prevent secondary consequences for patients with cardiovascular disease (CVD), maintenance of an active lifestyle following participation in cardiac rehabilitation (CR) is important. However, levels of physical activity often decrease after completion of a structured CR programme. Models that support long-term behaviour change with a sustained level of physical activity are imperative. The aim of this study is to evaluate the feasibility of a mobile health intervention based on the Health Action Process Approach theoretical model of behaviour change in patients with CVD for 3 months after completion of a CR programme. Methods and analysis In a feasibility trial design, we will recruit 40 participants from CR programmes at Slagelse Hospital, the City of Slagelse (municipality), or Holbæk Hospital. After completing the standard structured CR programme, each participant will create an action plan for physical activity together with a physiotherapist. Following that, participants are sent 2 weekly text messages for 3 months. The first text message prompts physical activity, and the second will check if the action plan has been followed. If requested by participants, a coordinator will call and guide the physical activities behaviour. The feasibility of this maintenance intervention is evaluated based on predefined progression criteria. Physical activity is measured with accelerometers at baseline and at 3 months follow-up. Ethics and dissemination Study approval was waived (EMN-2021-00020) by the Research Ethics Committee of Region Zealand, Denmark. Study results will be made public and findings disseminated to patients, health professionals, decision-makers, researchers and the public. Trial registration number NCT05011994.

PATIENT CHARACTERISTICS AND OTHER OUTCOMES

1 itemgroup 14 items

CLINICALLY ASSESSED OUTCOMES

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CLINICALLY ASSESSED OUTCOMES

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PATIENT-REPORTED OUTCOMES

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PATIENT-REPORTED OUTCOMES

1 itemgroup 10 items

FEASIBILITY OUTCOMES

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