Suchergebnisse - Portal für Medizinische Datenmodelle (MDM-Portal)

dataset CPCTR CDE Prostata Cancer prostate cancer - dataset

- 15.03.21 - 1 Formular, 24 Itemgruppen, 94 Datenelemente, 2 Sprachen

Itemgruppen: 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/

Acute Myeloid Leukemia - Lab: Biobanking

- 20.09.21 - 13 Formulare, 1 Itemgruppe, 3 Datenelemente, 1 Sprache

Itemgruppe: Cancer Biobank

Acute Myeloid Leukemia Common Data Elements Holz

Cancer (clinical) DSS Metadata Online Registry (METeOR)

- 03.08.16 - 1 Formular, 16 Itemgruppen, 65 Datenelemente, 1 Sprache

Itemgruppen: 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

- 26.04.16 - 1 Formular, 1 Itemgruppe, 18 Datenelemente, 1 Sprache

Itemgruppe: 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

- 20.09.21 - 1 Formular, 1 Itemgruppe, 9 Datenelemente, 1 Sprache

Itemgruppe: 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.

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

- 25.07.16 - 1 Formular, 5 Itemgruppen, 34 Datenelemente, 1 Sprache

Itemgruppen: Person with cancer, Person, Organisation, Medical specialist, Cancer treatment

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

- 02.04.17 - 1 Formular, 2 Itemgruppen, 20 Datenelemente, 1 Sprache

Itemgruppen: 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

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

- 07.09.16 - 1 Formular, 6 Itemgruppen, 47 Datenelemente, 1 Sprache

Itemgruppen: 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

Radiotherapy waiting times NMDS 2015- Metadata Online Registry (METeOR)

- 21.07.16 - 1 Formular, 4 Itemgruppen, 12 Datenelemente, 1 Sprache

Itemgruppen: Address, Establishment, Patient, 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) Radiotherapy waiting times NMDS 2015- The main purpose of the Radiotherapy waiting times national minimum data set (RWT NMDS) is to describe the information that must be collected to calculate the waiting times for the following time period in the treatment pathway for radiotherapy services in Australia: The time between the patient's ready-for-care date and the date of the first megavoltage external beam radiotherapy treatment. Establishments in scope are only those healthcare establishments that provide megavoltage external beam radiotherapy treatment (in-scope radiotherapy treatment). Both public and private establishments are in scope. While it is mandatory for public establishments to report data to the national minimum data set (NMDS), private providers are also encouraged to participate. The scope is not limited by diagnosis: it includes people with cancer (notifiable and non-notifiable) and people who do not have cancer. People in scope are those who started a course of radiotherapy treatment within the reference period. For public establishments, all in-scope activity should be reported, including services provided by specialists operating under right of private practice arrangements. © Australian Institute of Health and Welfare 2015 Metadata and Classifications Unit Australian Institute of Health and Welfare GPO Box 570 Canberra ACT 2601

Pre-existing Conditions Associated with Cancer Protocol PhenX Toolkit

- 26.04.16 - 1 Formular, 1 Itemgruppe, 13 Datenelemente, 1 Sprache

Itemgruppe: PhenX - pre-existing cancer conditions protocol

This self-administered protocol asks respondents to indicate the year of diagnosis for clinician-diagnosed illnesses. The respondent is also asked to provide the year of first diagnosis. 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.

Top 300 Laboratory Value Dataset of the Medical Informatics Initiative Germany (MII) (Extended Version) - CHEM

- 06.12.19 - 11 Formulare, 139 Itemgruppen, 447 Datenelemente, 1 Sprache

Itemgruppen: Creatinine, Potassium, Sodium, Glucose, C reactive protein, Alanine aminotransferase, Urea, Aspartate aminotransferase, Gamma glutamyl transferase, Albumin, Chloride, Glomerular filtration rate/1.73 sq M.predicted, Calcium.ionized, Calcium, Lactate dehydrogenase, Bilirubin, Creatine kinase, Alkaline phosphatase, Protein, Thyrotropin, Base excess, Urate, Lactate, Bicarbonate, Glomerular filtration rate/1.73 sq M.predicted, pH, Triacylglycerol lipase, Cholesterol.in LDL, C reactive protein, Phosphate, Thyroxine.free, Triiodothyronine.free, Triglyceride, Creatinine in Urine, Methemoglobin/Hemoglobin.total, Cholesterol, Acid phosphatase, Cholinesterase, pH in Urine, Cholesterol.in HDL, Ferritin, Troponin T.cardiac, Procalcitonin, Creatine kinase.MB, Natriuretic peptide.B prohormone N-Terminal, Iron, Calcidiol, Amylase, Beta 2 globulin/Protein.total, Beta 1 globulin/Protein.total, Albumin/Protein.total, Glutamate dehydrogenase, Alpha 1 globulin/Protein.total, Alpha 2 globulin/Protein.total, Beta globulin/Protein.total, Gamma globulin/Protein.total, Osmolality, Carcinoembryonic Ag, Cortisol, Albumin in Urine, Cystatin C, Cobalamins, IgM, IgG, Troponin I.cardiac, Folate, Transferrin, Lutropin, Myoglobin, IgA, Prostate specific Ag, Cholesterol.in LDL/Cholesterol.in HDL, Parathyrin.intact, Interleukin 6, Estradiol, Follitropin, Lipoprotein (little a), Bilirubin.glucuronidated+Bilirubin.albumin bound, Natriuretic peptide.B, Interpretation, Beta-2-Microglobulin, Alpha-1-Microglobulin in Urine, Angiotensin converting enzyme, Immunoglobulin light chains.kappa.free, Base excess^^standard, Protein/Creatinine in Urine, Testosterone, S100 calcium binding protein B, IgE, Prolactin, Bicarbonate^^standard, Osmolality in Urine, Cancer Ag 19-9, IgG in Urine, Osteocalcin, Protein, Ammonia, Bilirubin.non-glucuronidated, Lactate, Creatinine renal clearance, Homocysteine, Pyridoxal phosphate, Glucose, Calcium in Urine, Phosphate in Urine, Choriogonadotropin.beta subunit, Iron saturation, Sodium in Urine, Tumor necrosis factor.alpha, Protein, Corticotropin, Interleukin 2 receptor, Thyroglobulin, Progesterone, Alpha-2-Macroglobulin/Protein.total, Albumin/Creatinine in Urine, Lactate dehydrogenase, Enolase.neuron specific, Thiamine, Insulin-like growth factor-I, Immunoglobulin light chains.lambda.free, Dehydroepiandrosterone sulfate, Creatinine, Albumin, IgG, Bilirubin.glucuronidated, Choriogonadotropin (pregnancy test) in Urine, Holo-transcobalamin II, IgA, Albumin, IgM, Testosterone.free, Prostate specific Ag.free, Aldosterone, Triacylglycerol lipase, Sex hormone binding globulin, Urea in Urine, IgG subclass 4, Creatine kinase.MB/Creatine kinase.total

The Top 300 Dataset (Kerndatensatz Labor) was developed by the Medical Informatics Initiative Germany (MII) and contains frequency-sorted, LOINC-coded analyses of the university clinics in Göttingen, Gießen, Munich, Greifswald and Erlangen. This form shows a detailed description containing primary and secondary LOINC codes of the 300 most common laboratory parameters. For each of the 300 laboratory parameters an itemgroup was created with all accepted variants of the laboratory parameters as items (secondary LOINC codes), the first item being the preferred LOINC variant of the MII (primary LOINC code). The itemgroup title is based on the primary LOINC code. The list is divided into subforms by the associated classes of laboratory parameters. If more than one class, the parameters can be found in the MIXED subform. An overview of the preferred presentation can also be found in the MDM portal (Laboratory Tests (Overview)). https://www.medizininformatik-initiative.de/de/labordaten-in-der-medizininformatik-initiative Explanation of abbreviations for types of specimen and classes/subforms: Type of specimen: Bld = Blood BldA = arterial blood Ser = Serum Plas = Plasma RBC = Red blood cells PPP = Platelet poor plasma Urine sed = Urine sediment CSF = Cerebral spinal fluid Body fld = Body fluid Classes (Subforms): CHEM = Chemistry HEM/BC = Hematology/Blood Cell Count COAG = Coagulation study UA = Urinalysis CELLMARK = Cell markers CLIN = clinical not elsewhere classified DRUG/TOX = drug levels & toxicology SERO = serology MICRO = Microbiology SPEC = Specimen characteristics

Personal History of Gastrointestinal Conditions Protocol PhenX Toolkit

- 20.09.21 - 1 Formular, 1 Itemgruppe, 10 Datenelemente, 1 Sprache

Itemgruppe: PhenX - personal history of gastrointestinal conditions protocol

This self-administered questionnaire asks respondents about their personal history of several gastrointestinal conditions including colon or rectal polyps, gallbladder conditions, gastric ulcers, Barrett’s esophagus, ulcerative colitis/Crohn’s disease, colon or rectal cancer, pancreatic cancer, and gastrointestinal bleeding. The questionnaire also asks about a history of gastrointestinal procedures such as a colonoscopy, a sigmoidoscopy, and an upper endoscopy. 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.

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