Zoekresultaten - Portaal voor medische datamodellen (MDM-portaal)

Itemgroepen: Administrative Data, Demographic factors, Baseline clinical status, Non-motor aspects of experiences of daily living, Motor aspects of experiences of daily living, Overall health status

PARKINSON‘S DISEASE DATA COLLECTION Version 2.2.1 Revised April 10th, 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 Covered: Idiopathic Parkinson’s Disease Treatment Approaches: Pharmacotherapy | Behavioral Therapy | Exercise-Based Therapy | Deep Brain Stimulation | Infusion/Injection-Based Delivery This ODM-file contains patient-reported variables to be administered at baseline and annually from then on. Surveys used: Movement Disorder Society (MDS-UPDRS), Part I: Non-Motor Aspects of Experiences of Daily Living (nM- EDL). Both clinical- and patient-reported portions; Part II: Motor Aspects of Experiences of Daily Living (M-EDL). Patient-reported: The MDS-UPDRS requires a license (by International Parkinson’s and Movement Disorders Society), therefore the used items are not integrated into this version of the Parkinson's Disease Standard Set. International Parkinson’s and Movement Disorders Society (IPMDS) Non-motor symptoms questionnaire (NMSQ): The NMSQ requires a license. However, in ICHOM's Parkinson's Disease Standard Set only one question derived from 2 NMSQ items is used. Parkinson’s Disease Quality of Life Questionnaire (PDQ-8): The PDQ-8 requires a license (by Innovation, Oxford University), therefore the used items are not integrated into this version of the Parkinson's Disease Standard Set. ICHOM was supported for this standard set by the International Association for Parkinsonism and Related Disorders. Publication: De Roos P, Bloem BR, Kelley TA, et al. A Consensus Set of Outcomes for Parkinson’s Disease from the International Consortium for Health Outcomes Measurement. Journal of Parkinson’s disease. 2017;7(3):533-543. doi:10.3233/JPD-161055. For this version of the standard set, semantic annotation with UMLS CUIs has been added.

ICHOM Parkinson's Disease - Baseline and annual Clinical Form

- 30-04-20 - 1 Formulier, 2 Itemgroepen, 3 Data-elementen, 1 Taal

Itemgroepen: Administrative Data, Cognitive and psychiatric functioning

PARKINSON‘S DISEASE DATA COLLECTION Version 2.2.1 Revised April 10th, 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 Covered: Idiopathic Parkinson’s Disease Treatment Approaches: Pharmacotherapy | Behavioral Therapy | Exercise-Based Therapy | Deep Brain Stimulation | Infusion/Injection-Based Delivery This ODM-file contains clinical variables to be administered at baseline and annually from then on. Surveys used: Movement Disorder Society (MDS-UPDRS), Part I: Non-Motor Aspects of Experiences of Daily Living (nM- EDL). Both clinical- and patient-reported portions; Part II: Motor Aspects of Experiences of Daily Living (M-EDL). Patient-reported: The MDS-UPDRS requires a license (by International Parkinson’s and Movement Disorders Society), therefore the used items are not integrated into this version of the Parkinson's Disease Standard Set. International Parkinson’s and Movement Disorders Society (IPMDS) Non-motor symptoms questionnaire (NMSQ): The NMSQ requires a license. However, in ICHOM's Parkinson's Disease Standard Set only one question derived from 2 NMSQ items is used. Parkinson’s Disease Quality of Life Questionnaire (PDQ-8): The PDQ-8 requires a license (by Innovation, Oxford University), therefore the used items are not integrated into this version of the Parkinson's Disease Standard Set. ICHOM was supported for this standard set by the International Association for Parkinsonism and Related Disorders. Publication: De Roos P, Bloem BR, Kelley TA, et al. A Consensus Set of Outcomes for Parkinson’s Disease from the International Consortium for Health Outcomes Measurement. Journal of Parkinson’s disease. 2017;7(3):533-543. doi:10.3233/JPD-161055. For this version of the standard set, semantic annotation with UMLS CUIs has been added.

ICHOM Parkinson's Disease - Annual Clinical Form: Treatment variables

- 30-04-20 - 1 Formulier, 2 Itemgroepen, 7 Data-elementen, 1 Taal

Itemgroepen: Administrative Data, Treatment Variables

PARKINSON‘S DISEASE DATA COLLECTION Version 2.2.1 Revised April 10th, 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 Covered: Idiopathic Parkinson’s Disease Treatment Approaches: Pharmacotherapy | Behavioral Therapy | Exercise-Based Therapy | Deep Brain Stimulation | Infusion/Injection-Based Delivery This ODM-file contains clinically reported Treatment variables to be administered annually. Surveys used: Movement Disorder Society (MDS-UPDRS), Part I: Non-Motor Aspects of Experiences of Daily Living (nM- EDL). Both clinical- and patient-reported portions; Part II: Motor Aspects of Experiences of Daily Living (M-EDL). Patient-reported: The MDS-UPDRS requires a license (by International Parkinson’s and Movement Disorders Society), therefore the used items are not integrated into this version of the Parkinson's Disease Standard Set. International Parkinson’s and Movement Disorders Society (IPMDS) Non-motor symptoms questionnaire (NMSQ): The NMSQ requires a license. However, in ICHOM's Parkinson's Disease Standard Set only one question derived from 2 NMSQ items is used. Parkinson’s Disease Quality of Life Questionnaire (PDQ-8): The PDQ-8 requires a license (by Innovation, Oxford University), therefore the used items are not integrated into this version of the Parkinson's Disease Standard Set. ICHOM was supported for this standard set by the International Association for Parkinsonism and Related Disorders. Publication: De Roos P, Bloem BR, Kelley TA, et al. A Consensus Set of Outcomes for Parkinson’s Disease from the International Consortium for Health Outcomes Measurement. Journal of Parkinson’s disease. 2017;7(3):533-543. doi:10.3233/JPD-161055. For this version of the standard set, semantic annotation with UMLS CUIs has been added.

ICHOM Localized Prostate Cancer - Baseline Patient-reported Form

- 30-04-20 - 1 Formulier, 2 Itemgroepen, 15 Data-elementen, 1 Taal

Itemgroepen: Patient ID, Patient Factors

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 Baseline Patient-reported Form. To be used at baseline, i.e., post-diagnosis, pre-treatment. Excluding the Patient Reported Outcome questionnaires (separate form, as asked at multiple timepoints). Please timestamp all variables. Some Standard Set variables are collected at multiple timepoints, and we will ask you to submit these variables in a concatenated VARIABLEID_TIMESTAMP form for future analyses. TEST StudyFor example, VARIABLEID_BASE (baseline); VARIABLEID_6MO (6 month follow-up); VARIABLEID_1YR (1 year follow-up), etc. Survey 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. 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 in this Version of the questionnaire. 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 Cataracts - Patient-Reported Visual Function (pre- and post-operative)

- 30-04-20 - 1 Formulier, 2 Itemgroepen, 11 Data-elementen, 1 Taal

Itemgroepen: Administrative Data, Patient-reported visual function

CATARACTS DATA COLLECTION Version 2.0.1 Revised: March 8th, 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. Conditions: Symptomatic Cataract | Asymptomatic Cataract Treatment Approaches: Phacoemulsification | Sutured Extracapsular Cataract Extraction | Sutureless Extracapsular Cataract Extraction | Intracapsular Cataract Extraction Scores: Catquest-9SF - The Catquest-9SF is free for all health care organizations, and a license is not needed for use. By Mats Lundström This ODM-file contains pre- and post-operative patient froms. To be filled in by patient prior to and within 3 months after surgery. Publication: Mahmud I, Kelley T, Stowell C, et al. A Proposed Minimum Standard Set of Outcome Measures for Cataract Surgery. JAMA Ophthalmol. 2015;133(11):1247–1252. doi:10.1001/jamaophthalmol.2015.2810 For this version of the standard set, semantic annotation with UMLS CUIs has been added.

ICHOM Cataracts - Post-operative Clinical Form - Outcomes

- 30-04-20 - 1 Formulier, 3 Itemgroepen, 16 Data-elementen, 1 Taal

Itemgroepen: Administrative Data, Post-operative visual status, Post-operative complications

CATARACTS DATA COLLECTION Version 2.0.1 Revised: March 8th, 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. Conditions: Symptomatic Cataract | Asymptomatic Cataract Treatment Approaches: Phacoemulsification | Sutured Extracapsular Cataract Extraction | Sutureless Extracapsular Cataract Extraction | Intracapsular Cataract Extraction Scores: Catquest-9SF - The Catquest-9SF is free for all health care organizations, and a license is not needed for use. By Mats Lundström et al. This ODM-file contains the post-operative clinical form. The items are to be filled in with clinical or administrative data, collected within three months after cataract surgery. Publication: Mahmud I, Kelley T, Stowell C, et al. A Proposed Minimum Standard Set of Outcome Measures for Cataract Surgery. JAMA Ophthalmol. 2015;133(11):1247–1252. doi:10.1001/jamaophthalmol.2015.2810 For this version of the standard set, semantic annotation with UMLS CUIs has been added.

ICHOM Localized Prostate Cancer - Clinical Form after primary or salvage surgery

- 30-04-20 - 1 Formulier, 2 Itemgroepen, 7 Data-elementen, 1 Taal

Itemgroepen: Patient ID, Pathological Information

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 a Clinical Form to be used after primary or salvage surgery. Please timestamp all variables. Some Standard Set variables are collected at multiple timepoints, and we will ask you to submit these variables in a concatenated VARIABLEID_TIMESTAMP form for future analyses. TEST StudyFor example, VARIABLEID_BASE (baseline); VARIABLEID_6MO (6 month follow-up); VARIABLEID_1YR (1 year follow-up), etc. Survey 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. 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 in this Version of the questionnaire. 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 Localized Prostate Cancer - Baseline Clinical Form

- 30-04-20 - 1 Formulier, 2 Itemgroepen, 10 Data-elementen, 1 Taal

Itemgroepen: Patient ID, Baseline Tumor Factors

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 Baseline Clinical Form. To be used at baseline, i.e., post-diagnosis, pre-treatment. Please timestamp all variables. Some Standard Set variables are collected at multiple timepoints, and we will ask you to submit these variables in a concatenated VARIABLEID_TIMESTAMP form for future analyses. TEST StudyFor example, VARIABLEID_BASE (baseline); VARIABLEID_6MO (6 month follow-up); VARIABLEID_1YR (1 year follow-up), etc. Survey 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. 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 in this Version of the questionnaire. For more information, please visit http://groups.eortc.be/qol/eortc-qlq-c30 . ICHOM was supported for this 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.

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