Résultats de recherche - Portail des modèles médicaux de données (portail MDM)

ICHOM Chronic Kidney Disease - Patient-reported Outcome

- 30/04/2020 - 1 Formulaire, 2 Groupes Item, 41 Eléments de données, 1 Langue

Groupes Item: Administrative Data, Patient-Reported Health and Wellbeing

CHRONIC KIDNEY DISEASE DATA COLLECTION Version 1.0.0 Revised October 25th, 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: Chronic Kidney Disease Stage G3a/A3 | Chronic Kidney Disease StageG 3b/A2/A3 | Chronic Kidney Disease Stage G4 | Chronic Kidney Disease Stage G5 (KDIGO 2012 Stages) Treatment Approaches: Pre-RRT = Pre-Renal Replacement Therapy | HD = Haemodialysis | PD = Peritoneal Dialysis | Tx = Renal Transplantation | CC = Conservative Care This ODM-file contains patient reported outcome variables, to be collected at baseline and 6-monthly (HD, PD and CC) or annually (Pre-RRT and Tx) after that, from the following surveys: PROMIS-Global Health and PROMIS-29: 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. RAND-36: The RAND 36-Item Short Form Survey (SF-36) was developed at RAND as part of the Medical Outcomes Study: https://www.rand.org/health/surveys_tools/mos/36-item-short-form.html . Publication: Verberne WR, Das-Gupta Z, Allegretti AS, et al. Development of an International Standard Set of Value-Based Outcome Measures for Patients With Chronic Kidney Disease: A Report of the International Consortium for Health Outcomes Measurement (ICHOM) CKD Working Group. American Journal of Kidney Diseases. Volume 73, Issue 3, 2019, Pages 372-384, ISSN 0272-6386, https://doi.org/10.1053/j.ajkd.2018.10.007 ICHOM was supported for the Chronic Kidney Disease Standard Set by NSW Agency for Clinical Innovation, Providence Health and Services, ERCPA, santeon and Dutch Kidney Foundation. For this version of the standard set, semantic annotation with UMLS CUIs has been added.

ICHOM Chronic Kidney Disease - Baseline Characteristics, Baseline Condition Factors and Treatment-specific Variables (administrative / clinical)

- 30/04/2020 - 1 Formulaire, 4 Groupes Item, 43 Eléments de données, 1 Langue

Groupes Item: Patient ID, Baseline Characteristics, Baseline Condition Factors, Treatment-specific

CHRONIC KIDNEY DISEASE DATA COLLECTION REFERENCE GUIDE Version 1.0.0 Revised October 25th, 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: Chronic Kidney Disease Stage G3a/A3 | Chronic Kidney Disease StageG 3b/A2/A3 | Chronic Kidney Disease Stage G4 | Chronic Kidney Disease Stage G5 (KDIGO 2012 Stages) Treatment Approaches: Pre-RRT = Pre-Renal Replacement Therapy | HD = Haemodialysis | PD = Peritoneal Dialysis | Tx = Renal Transplantation | CC = Conservative Care This ODM-file contains Baseline Characteristics, Baseline Condition factors and Treatment-specific variables, clinical or administrative. To be collected at Baseline Visit. Surveys used: The OptumTM SF-36v2® Health Survey: The SF-36v2 Health Survey requires a license agreement prior to the use or reprodution of the tool. Information on how to obtain a license can be found here: bit.ly/SF36LIC . The scoring guide for the SF36v2 is only available upon a license agreement being made. Due to the requirement of a license the Score cannot be found in this version of the standard set. PROMIS-Global Health and PROMIS-29: Free for use in clinical practice and a license is not required. Information http://www.nihpromis.org/measures/translations . The scoring guides for the two PROMIS Scores can be found at bit.ly/PROMISGLOBALSCORE and bit.ly/PROMIS29SCORE . RAND-36: Free for use in clinical practice and a license is not required. The RAND-36 is available in English and Arabic. https://www.rand.org/health/surveys_tools/mos/36-item-short-form.html . The Scoring guide can be found at bit.ly/RAND36Score . Publication: Verberne WR, Das-Gupta Z, Allegretti AS, et al. Development of an International Standard Set of Value-Based Outcome Measures for Patients With Chronic Kidney Disease: A Report of the International Consortium for Health Outcomes Measurement (ICHOM) CKD Working Group. American Journal of Kidney Diseases. Volume 73, Issue 3, 2019, Pages 372-384, ISSN 0272-6386, https://doi.org/10.1053/j.ajkd.2018.10.007 ICHOM was supported for the Chronic Kidney Disease Standard Set by NSW Agency for Clinical Innovation, Providence Health and Services, ERCPA, santeon and Dutch Kidney Foundation. For this version of the standard set, semantic annotation with UMLS CUIs has been added.

ICHOM Chronic Kidney Disease - Outcome (Clinical / administrative)

- 30/04/2020 - 1 Formulaire, 3 Groupes Item, 14 Eléments de données, 1 Langue

Groupes Item: Administrative Data, Survival, Burden of Care

CHRONIC KIDNEY DISEASE DATA COLLECTION Version 1.0.0 Revised October 25th, 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: Chronic Kidney Disease Stage G3a/A3 | Chronic Kidney Disease StageG 3b/A2/A3 | Chronic Kidney Disease Stage G4 | Chronic Kidney Disease Stage G5 (KDIGO 2012 Stages) Treatment Approaches: Pre-RRT = Pre-Renal Replacement Therapy | HD = Haemodialysis | PD = Peritoneal Dialysis | Tx = Renal Transplantation | CC = Conservative Care This ODM-file contains Outcome variables, clinical or administrative. To be collected 6-monthly, annually or ongoing. Surveys used: The OptumTM SF-36v2® Health Survey: The SF-36v2 Health Survey requires a license agreement prior to the use or reprodution of the tool. Information on how to obtain a license can be found here: bit.ly/SF36LIC . The scoring guide for the SF36v2 is only available upon a license agreement being made. Due to the requirement of a license the Score cannot be found in this version of the standard set. PROMIS-Global Health and PROMIS-29: Free for use in clinical practice and a license is not required. Information http://www.nihpromis.org/measures/translations . The scoring guides for the two PROMIS Scores can be found at bit.ly/PROMISGLOBALSCORE and bit.ly/PROMIS29SCORE . RAND-36: Free for use in clinical practice and a license is not required. The RAND-36 is available in English and Arabic. https://www.rand.org/health/surveys_tools/mos/36-item-short-form.html . The Scoring guide can be found at bit.ly/RAND36Score . Publication: Verberne WR, Das-Gupta Z, Allegretti AS, et al. Development of an International Standard Set of Value-Based Outcome Measures for Patients With Chronic Kidney Disease: A Report of the International Consortium for Health Outcomes Measurement (ICHOM) CKD Working Group. American Journal of Kidney Diseases. Volume 73, Issue 3, 2019, Pages 372-384, ISSN 0272-6386, https://doi.org/10.1053/j.ajkd.2018.10.007 ICHOM was supported for the Chronic Kidney Disease Standard Set by NSW Agency for Clinical Innovation, Providence Health and Services, ERCPA, santeon and Dutch Kidney Foundation. For this version of the standard set, semantic annotation with UMLS CUIs has been added.

Quality assurance Living Donor Renal Transplant (AQUA)

- 10/04/2021 - 1 Formulaire, 5 Groupes Item, 30 Eléments de données, 2 Langues

Groupes Item: Basisdokumentation, Anamnese, Operation, Verlauf, Entlassung

Documentation form for quality assurance in German Health Care by the institute forapplied quality Improvement and Research in Health Care (Aqua), https://www.aqua-institut.de/en/home. Internal Aqua form version: NLS Specification 2015 V02

Quality assurance Follow-up Living Donor Renal Transplant (AQUA) - Quality assurance Follow-up Living Donor Renal Transplant (AQUA)

- 13/04/2021 - 1 Formulaire, 1 Groupe Item, 22 Eléments de données, 2 Langues

Groupe Item: Follow-up(auszufüllen nach 1, 2 und 3 Jahren)

Documentation form for quality assurance in German Health Care by the institute forapplied quality Improvement and Research in Health Care (Aqua), https://www.aqua-institut.de/en/home. Internal Aqua form version: NLSFU Specification 2015 V02

Quality assurance Renal And Pancreatic-(Renal-) Transplant (AQUA): Basic

- 13/04/2021 - 1 Formulaire, 3 Groupes Item, 24 Eléments de données, 2 Langues

Groupes Item: Basisdaten Empfänger, Empfängerdaten, Entlassung Empfänger

Documentation form for quality assurance in German Health Care by the institute forapplied quality Improvement and Research in Health Care (Aqua), https://www.aqua-institut.de/en/home. Internal Aqua form version: PNTX-B Specification 2015 V02

Quality assurance Follow-up Renal And Pancreatic-(Renal-) Transplant (AQUA) - Quality assurance Follow-up Renal And Pancreatic-(Renal-) Transplant (AQUA)

- 13/04/2021 - 1 Formulaire, 1 Groupe Item, 26 Eléments de données, 2 Langues

Groupe Item: Follow-up(auszufüllen nach 1, 2 und 3 Jahren)

Documentation form for quality assurance in German Health Care by the institute forapplied quality Improvement and Research in Health Care (Aqua), https://www.aqua-institut.de/en/home. Internal Aqua form version: PNTXFU Specification 2015 V02

Serum Creatinine Assay Protocol PhenX Toolkit

- 26/04/2016 - 1 Formulaire, 1 Groupe Item, 9 Eléments de données, 1 Langue

Groupe Item: PhenX - serum creatinine assay for kidney function protocol

This protocol provides instructions for drawing, processing, and storing blood for the serum creatinine assay according to the National Health and Nutrition Examination Survey (NHANES) methods. Creatinine concentration in a participant’s serum is measured according to the Jaffe rate method. ODM derived from: https://cde.nlm.nih.gov Primary source: https://www.phenxtoolkit.org/ Recent publication: Hendershot, T., Pan, H., Haines, J., Harlan, W.R., Marazita, M.L., McCarty, C.A., Ramos, E.M., and Hamilton, C.M. (2015) Using the PhenX toolkit to add standard measures to a study. Curr. Protoc. Hum. Genet. 86:1.21.1-1.21.17. doi: 10.1002/0471142905.hg0121s86 Permission to publish granted by Carol M. Hamilton.

SOFA Score

- 21/12/2017 - 1 Formulaire, 6 Groupes Item, 6 Eléments de données, 2 Langues

Groupes Item: Respiration, Coagulation, Liver Function, Cardiovascular Function, Central nervous system function, Renal

The SOFA (Sequential Organ Failure Assessment) score to describe organ dysfunction/failure. Reference: Vincent, J.-., Moreno, R., Takala, J. et al. Intensive Care Med (1996) 22: 707. doi:10.1007/BF01709751

Logistic Organ Dysfunction System (LODS) score

- 25/01/2018 - 1 Formulaire, 7 Groupes Item, 19 Eléments de données, 1 Langue

Groupes Item: Neurologic System, Cardiovascular System, Renal System, Pulmonary System, Hematologic System, Hepatic System, total score

The LOD System provides an objective tool for assessing severity levels for organ dysfunction in the ICU, a critical component in the conduct of clinical trials. Reference: Jean-Roger Le Gall, Janelle Klar, Stanley Lemeshow, Fabienne Saulnier, Corinne Alberti, Antonio Artigas, Daniel Teres. The Logistic Organ Dysfunction System: A New Way to Assess Organ Dysfunction in the Intensive Care Unit. JAMA. 1996;276(10):802–810. doi:10.1001/jama.1996.03540100046027

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