Resultados de la búsqueda - Portal de Modelos de Datos Médicos (MDM-Portal)

Breast Cancer DataMart Common Data Elements for Adjuvant Clinical Trials

- 20/9/21 - 1 formulario, 16 itemgroups, 122 items, 1 idioma

Itemgroups: Patient Characteristics, Patient Performance Status, Protocol Design, Surgical Procedures, Pathologic Disease Classification, Pathology: Assessment of Lymph Nodes, Margins, Estrogen Status, Progesterone Status, Pathology: Breast Tumor Markers, Pathology: Assessment of Ductal Carcinoma In Situ (DCIS), Pathology: Assessment of Lobular Carcinoma In Situ (LCIS), Endpoints, Tumor Response, Sites of Progression, Notice of New Primary

Treatment - Breast Cancer DataMart Common Data Elements for Adjuvant Clinical Trials - 2719861v1.0 Breast Cancer DataMart Common Data Elements for Adjuvant Clinical Trials Source Form: NCI FormBuilder: https://formbuilder.nci.nih.gov/FormBuilder/formDetailsAction.do?method=getFormDetails&formIdSeq=43B3F0AE-1119-0B42-E044-0003BA3F9857

Treatment - Breast Cancer DataMart Common Data Elements Surgical Template - 2723098v1.0 - Breast Cancer DataMart Common Data Elements Surgical Template

- 20/9/17 - 1 formulario, 5 itemgroups, 24 items, 1 idioma

Itemgroups: Tumor Assessment, Assessment of Lymph Nodes, Surgical Procedures, Margins, Breast Reconstruction

Breast Cancer DataMart Common Data Elements Surgical Template Source Form: NCI FormBuilder: https://formbuilder.nci.nih.gov/FormBuilder/formDetailsAction.do?method=getFormDetails&formIdSeq=443F4BFB-7974-666C-E044-0003BA3F9857

Treatment - Proposed Breast Cancer DataMart Common Data Elements for Pre-Operative Clinical Trials - 2722335v1.0 - Proposed Breast Cancer DataMart Common Data Elements for Pre-Operative Clinical Trials

- 20/9/12 - 1 formulario, 7 itemgroups, 53 items, 1 idioma

Itemgroups: Clinical/Imaging Examination of the Breast, Clinical/Imaging Examination of Lymph Nodes, Pre-operative Surgical Evaluation, Diagnostic Pathology of Breast and Lymph Nodes, Marker Status, Therapeutic Changes, Residual Cancer Burden

Proposed Breast Cancer DataMart Common Data Elements for Pre-Operative Clinical Trials Source Form: NCI FormBuilder: https://formbuilder.nci.nih.gov/FormBuilder/formDetailsAction.do?method=getFormDetails&formIdSeq=43F0A8A5-2CF0-6BFA-E044-0003BA3F9857

Cancer (clinical) DSS Metadata Online Registry (METeOR)

- 3/8/16 - 1 formulario, 16 itemgroups, 65 items, 1 idioma

Itemgroups: Chemotherapy for cancer cluster, Hormone therapy for cancer cluster, Immunotherapy for cancer cluster, Radiotherapy for cancer cluster, Surgery for cancer cluster, Systemic therapy procedure for cancer cluster, Cancer staging, Cancer treatment, Date, Establishment, Healthcare provider, Patient, Person (address), Person (name), Person with cancer, Person

Health sector data set specifications from METeOR, Australia's repository for national metadata standards, developed by the Australian Institute of Health and Welfare (http://meteor.aihw.gov.au/content/index.phtml/itemId/345165) Cancer (clinical) DSS The purpose of the Cancer (clinical) data set specification (C(C)DSS) is to define data standards for the national collection of clinical cancer data so that data collected is consistent and reliable. Collection of this data set specification is not mandated but it is recommended as best practice if clinical cancer data are to be collected. It will facilitate more consistent data collection while enabling individual treatment centres or health service areas to develop data extraction and collection processes and policies that are appropriate for their service settings. Mandatory reporting regulations have enabled population-based cancer registries in Australia to collect standard information on all incident cases of cancer apart from non-melanoma skin cancers, from which incidence, mortality and overall survival have been determined and trends monitored. The Cancer (clinical) data set specification provides a framework for the collection of more detailed and comprehensive clinical data such as stage of cancer at diagnosis, other prognostic characteristics, cancer treatment and patient outcomes. The Cancer (clinical) data set specification will support prospective data collection from the time a person with cancer symptoms is referred or first presents to a hospital or specialist through the entire duration of their illness. The majority of data items in the Cancer (clinical) data set specification are applicable to most solid tumours while many are also relevant to the haematopoietic malignancies such as leukaemia and lymphoma. Data set specifications for specialist tumour streams are also under development and these will contain supplementary data elements that will capture the special features of specific cancer types. The definitions used in this data set specification are designed to capture the provision of cancer care on a day-to-day level. They relate to the cancer care pathway and the need to optimise care by correctly diagnosing, evaluating and managing patients with cancer. In addition, end-points and patterns of care can be monitored to understand both the appropriateness and effectiveness of cancer care. The data elements specified provide a framework for: • promoting the delivery of evidence-based care to patients with cancer • facilitating the ongoing improvement in the quality and safety of cancer management in treatment settings • improving the epidemiological and public health understanding of cancer • informing treatment guidelines and professional education • guiding resource planning and the evaluation of cancer control activities They will facilitate the aggregation of data across different treatment centres. The underlying long-term goal is to provide data support to improve outcomes for patients by increasing the quality and length of life. For example, a comparison of the actual management of patients with best practice guidelines may identify shortfalls in treatment and limitations in access to treatment modalities for some patients. The working group formed under the stewardship of Cancer Australia was diverse and included representation from the following organisations: Cancer Australia, University of Sydney-Department of Gynaecological Oncology, Westmead Institute for Cancer Research, Cancer Council Victoria, Royal Brisbane & Women’s Hospital, National Breast and Ovarian Cancer Centre, The Royal Women's Hospital, Queensland Health, Ministry of Health, NSW Health, TROG Cancer Research, and the Cancer Institute NSW. To ensure the broad acceptance of the data set specification, the proposed list of data items was circulated to members of Cancer Australia’s National Cancer Data Strategy Advisory Group, a multidisciplinary group with a broad spectrum of epidemiological knowledge and expertise, and the inter-governmental Strategic Forum, comprising clinicians and senior health department officials from the Australian Government and from each state and territory government, and with strong community representation. The working group also sought consultation from cancer registry data managers, clinical leaders, pathologists, medical oncologists and radiation oncologists to achieve consensus when required. The Cancer (clinical) data set specification is intended to only describe data collected in relation to the initial course of cancer treatment. The initial course of treatment includes all treatments administered to the patient from diagnosis and before disease progression or recurrence. © Australian Institute of Health and Welfare 2015 Metadata and Classifications Unit Australian Institute of Health and Welfare GPO Box 570 Canberra ACT 2601

Cancer Treatments Protocol PhenX Toolkit

- 26/4/16 - 1 formulario, 1 itemgroup, 18 items, 1 idioma

Itemgroup: PhenX - cancer treatment protocol

These questions start by asking if the respondent has had cancer. For respondents who have had cancer, detailed follow-up questions ask about the type of cancer treatment, including surgery, chemotherapy, radiation, and hormone therapy. 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.

Cancer: Personal and Family History Protocol PhenX Toolkit

- 20/9/21 - 1 formulario, 1 itemgroup, 9 items, 1 idioma

Itemgroup: PhenX - cancer - personal and family history protocol

This protocol is used to assess if the respondent and his or her biological parents, siblings, and children have had cancer. This protocol also obtains information about vital status, age, type of cancer, age at first diagnosis, and any additional cancer diagnoses. 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.

dataset CPCTR CDE Prostata Cancer prostate cancer - dataset

- 15/3/21 - 1 formulario, 24 itemgroups, 94 items, 2 idiomas

Itemgroups: Demographics, Clinical History, Prostatic specific Antigen (PSA), Diagnostic PSA, PSA Matrix, Histological Characteristics of Prostatectomy, Prostatectomy: Primary Gleason Grade, Prostatectomy: Secondary Gleason Grade, Prostatectomy: Gleason Sum Score, Histological Characteristics of Prostatectomy II, Regional Lymph node status at the time of Prostatectomy, Recurrence/Metastasis Status, Clinical verified tissue recurrence/metastasis, Staging, Pathological staging, Clinical Staging, Vital Status/Follow Up Date, Therapy Matrix, Type of Therapy, Overall Needle Biopsy Attributes, Biopsy: Primary Gleason Grade, Biopsy: Secondary Gleason Grade, Biopsy: Gleason Sum Score, Overall Needle Biopsy Attributes II

with friendly permission, ODM derived from PDFs attached to the paper: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1236914/

Lung cancer (clinical) DSS Metadata Online Registry (METeOR)

- 7/9/16 - 1 formulario, 6 itemgroups, 47 items, 1 idioma

Itemgroups: Cancer treatment, Health service event, Patient, Person (address), Person with cancer, Person

Health sector data set specifications from METeOR, Australia's repository for national metadata standards, developed by the Australian Institute of Health and Welfare (http://meteor.aihw.gov.au/content/index.phtml/itemId/345165) Lung cancer (clinical) DSS: The purpose of the Lung cancer (clinical) data set specification (LCCDSS) is to define data standards for the national collection of lung cancer clinical data so that data collected is consistent and reliable. Collection of this data set specification is not mandated but it is recommended as best practice if clinical cancer data are to be collected. It will facilitate more consistent data collection while enabling individual treatment centres or health service areas to develop data extraction and collection processes and policies that are appropriate for their service settings. The Lung cancer (clinical) data set specification is used in conjunction with the Cancer (clinical) data set specification (CCDSS). Mandatory reporting regulations have enabled population-based cancer registries in Australia to collect standard information on all incident cases of cancer apart from non-melanoma skin cancers, from which incidence, mortality and overall survival have been determined and trends monitored. The CCDSS provides a framework for the collection of more detailed and comprehensive clinical data such as stage of cancer at diagnosis, other prognostic characteristics, cancer treatment and patient outcomes. The Lung cancer (clinical) data set specification will support prospective data collection from the time a person with cancer symptoms is referred or first presents to a hospital or specialist through the entire duration of their illness. The definitions used in this data set specification are designed to capture the provision of cancer care on a day-to-day level. They relate to the cancer care pathway and the need to optimise care by correctly diagnosing, evaluating and managing patients with cancer. In addition, end-points and patterns of care can be monitored to understand both the appropriateness and effectiveness of cancer care. The data elements specified provide a framework for: • promoting the delivery of evidence-based care to patients with cancer • facilitating the ongoing improvement in the quality and safety of cancer management in treatment settings • improving the epidemiological and public health understanding of cancer • informing treatment guidelines and professional education • guiding resource planning and the evaluation of cancer control activities They will facilitate the aggregation of data across different treatment centres. The underlying long-term goal is to provide data support to improve outcomes for patients by increasing the quality and length of life. For example, a comparison of the actual management of patients with best practice guidelines may identify shortfalls in treatment and limitations in access to treatment modalities for some patients. Metadata and Classifications Unit Australian Institute of Health and Welfare GPO Box 570 Canberra ACT 2601

Breast cancer (cancer registries) DSS Metadata Online Registry (METeOR)

- 2/4/17 - 1 formulario, 2 itemgroups, 20 items, 1 idioma

Itemgroups: Patient, Person with cancer

Health sector data set specifications from METeOR, Australia's repository for national metadata standards, developed by the Australian Institute of Health and Welfare (http://meteor.aihw.gov.au/content/index.phtml/itemId/345165) Breast cancer (cancer registries) DSS This breast cancer data set is not mandated for collection but is recommended as best practice if breast cancer data are to be collected. The data set would allow common, consistent and high quality breast cancer data to be collected by State and Territory cancer registries and collated nationally. This data will help inform research, policy, planning and guideline development work in the breast cancer area. Breast cancer may be used as a forerunner for other cancers in terms of establishing common data collections across cancer registries. This data set includes 20 items, with the inclusion of five new standards and the addition of further detail to several existing standards. © Australian Institute of Health and Welfare 2015 Metadata and Classifications Unit Australian Institute of Health and Welfare GPO Box 570 Canberra ACT 2601

EORTC QLQ_C30 - EORTC QLQ_C30 MS University Hospital Muenster (UKM)

- 7/11/17 - 1 formulario, 1 itemgroup, 3 items, 1 idioma

Itemgroup: General information

Used as Hospital Routine Documentation Form at the University Hospital Muenster. Original Form name: EORTC QLQ-C30 MS. Copyright: 1995 EORTC Quality of Life Group. All rights reserved. Version 3.0 German description: EORTC QLQ-C30 (version 3.0) Wir sind an einigen Angaben interessiert, die Sie und Ihre Gesundheit betreffen. Bitte beantworten Sie die folgenden Fragen selbst, indem Sie die Zahl ankreuzen, die am besten auf Sie zutrifft. Es gibt keine "richtigen" oder "falschen" Antworten. Ihre Angaben werden streng vertraulich behandelt.

Human genetics Senology University Hospital Muenster (UKM) - Checklist for detecting a hereditary burden of breast and / or ovarian cancer

- 14/10/16 - 1 formulario, 6 itemgroups, 36 items, 1 idioma

Itemgroups: Demographic Information, Score A: Patient and siblings/offspring, Score B: Maternal line, Score C: paternal line, Score D: Higher value from B and C, E: Risk Score

Hospital Routine Documentation Form at the University Hospital Muenster. Original Form name: Humangenetik Senologie:Checkliste zur Erfassung einer erblichen Belastung für Brust- und/oder Eierstockkrebs

Measurement Instrument Database for the Social Science (MIDSS) - Measure of Body Apperception (MBA)

- 21/7/20 - 1 formulario, 1 itemgroup, 10 items, 1 idioma

Itemgroup: Measure of Body Apperception (MBA)

Carver, C. S.. (2013). Measure of Body Apperception (MBA). Measurement Instrument Database for the Social Science. Retrieved 21.07.2020 from www.midss.ie Key references: Carver, C. S., Pozo-Kaderman, C., Price, A. A., Noriega, V., Harris, S. D., Derhagopian, R. P., Robinson, D. S., & Moffatt, F. L., Jr. (1998). Concern about aspects of body image and adjustment to early stage breast cancer. Psychosomatic Medicine, 60, 168-174. Petronis, V. M., Carver, C. S., Antoni, M. H., & Weiss, S. (2003). Investment in body image and psychosocial well-being among women treated for early stage breast cancer: Partial replication and extension. Psychology and Health, 18, 1-13. Primary use / Purpose: Measures self-reported appreciation of body. Background: Body image is often thought of in terms of physical appearance, but there is also a body image pertaining to integrity, wholeness, and normal functioning. People who are greatly concerned about either aspect of their body image are vulnerable to poorer psychosocial adjustment when confronting treatment for breast cancer. The poorer adjustment takes a different form, however, depending on the nature of the patient's body-image concern . The Measure of Body Apperception (MBA) is a measure of the investment in, or dependence on, one's body image as a source of the sense of self-worth. It has two scales, which reflect reliance on physical appearance, and reliance on a sense of body intactness or integrity. Psychometrics: For details on psychometrics see: Carver, C. S., Pozo-Kaderman, C., Price, A. A., Noriega, V., Harris, S. D., Derhagopian, R. P., Robinson, D. S., & Moffatt, F. L., Jr. (1998). Concern about aspects of body image and adjustment to early stage breast cancer. Psychosomatic Medicine, 60, 168-174. Web link to tool: http://www.psy.miami.edu/faculty/ccarver/sclMBA.html Digital Object Identifier (DOI): http://dx.doi.org/10.13072/midss.538 Scoring: Items 1, 3, 6, and 8 constitute the subtotal for investment in appearance Items 2, 4, 7, and 9 constitute the subtotal for investment in body integrity Items 5 and 10 are fillers, not scored.

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