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dataset CPCTR CDE Prostata Cancer prostate cancer - dataset

- 15-03-21 - 1 Formulier, 24 Itemgroepen, 94 Data-elementen, 2 Talen
Itemgroepen: 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/

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

- 02-04-17 - 1 Formulier, 2 Itemgroepen, 20 Data-elementen, 1 Taal
Itemgroepen: 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

Cancer Treatments Protocol PhenX Toolkit

- 26-04-16 - 1 Formulier, 1 Itemgroep, 18 Data-elementen, 1 Taal
Itemgroep: 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.

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

- 07-09-16 - 1 Formulier, 6 Itemgroepen, 47 Data-elementen, 1 Taal
Itemgroepen: 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

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

- 25-07-16 - 1 Formulier, 5 Itemgroepen, 34 Data-elementen, 1 Taal
Itemgroepen: Person with cancer, Person, Organisation, Medical specialist, Cancer treatment
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) Gynaecological cancer (clinical) DSS The purpose of the Gynaecological cancer (clinical) data set specification (DSS) is to define data standards for the national collection of gynaecological cancer data so that data collected is consistent and reliable. The data set specification is not mandated for collection but is recommended as best practice if gynaecological cancer data is to be collected. It enables individual treatment centres or health service areas to develop collection methods and policies appropriate for their service. The Gynaecological cancer (clinical) data set specification is used in conjunction with the Cancer (clinical) data set specification (CCDSS). The data elements with obligations described as mandatory or conditional for collection are recommended as best practice, while the data items described as optional are for collection at the discretion of the treating centre and may be contingent, for example, on the availability of resources. The scope for the Gynaecological cancer (clinical) DSS is to collect comprehensive data encompassing the time a person is first referred for the investigation of symptoms and for the entire duration of their illness so that treatment and outcomes are captured. 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 realities of cancer care and the need to optimise care by correctly diagnosing, evaluating and managing patients with gynaecological cancer. The data elements specified provide a framework for: · providing a systematic foundation and promoting the delivery of evidence-based care to patients with gynaecological cancer · informing treatment guidelines and professional education · informing quality assurance · guiding resource planning and the evaluation of cancer control activities Many of the data elements in this data set specification may also be used in the collection of data for other types of cancer. This data set specification is primarily directed at the clinical and clinical epidemiological use of cancer data. Treatment centres such as hospitals, radiotherapy centres and cancer specialist practices are the settings in which implementation of the Gynaecological cancer (clinical) data set specification should be considered. The data set specification can also be used by a wider range of health and health-related establishments that create, use or maintain records on health-care clients. © Australian Institute of Health and Welfare 2015 Metadata and Classifications Unit Australian Institute of Health and Welfare GPO Box 570 Canberra ACT 2601

Cancer: Personal and Family History Protocol PhenX Toolkit

- 20-09-21 - 1 Formulier, 1 Itemgroep, 9 Data-elementen, 1 Taal
Itemgroep: 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.

Cancer (clinical) DSS Metadata Online Registry (METeOR)

- 03-08-16 - 1 Formulier, 16 Itemgroepen, 65 Data-elementen, 1 Taal
Itemgroepen: 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

Pre-existing Conditions Associated with Cancer Protocol PhenX Toolkit

- 26-04-16 - 1 Formulier, 1 Itemgroep, 13 Data-elementen, 1 Taal
Itemgroep: 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.

Acute Myeloid Leukemia - Lab: Biobanking

- 20-09-21 - 13 Formulieren, 1 Itemgroep, 3 Data-elementen, 1 Taal
Itemgroep: Cancer Biobank
Acute Myeloid Leukemia Common Data Elements Holz

Personal History of Gastrointestinal Conditions Protocol PhenX Toolkit

- 20-09-21 - 1 Formulier, 1 Itemgroep, 10 Data-elementen, 1 Taal
Itemgroep: 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.

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

- 21-07-16 - 1 Formulier, 4 Itemgroepen, 12 Data-elementen, 1 Taal
Itemgroepen: 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

Alcohol and other drug treatment services NMDS 2015- Statistical linkage key 581 cluster Metadata Online Registry (METeOR)

- 03-08-16 - 1 Formulier, 3 Itemgroepen, 6 Data-elementen, 1 Taal
Itemgroepen: Person, Record, Date
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) Statistical linkage key 581 Statistical data linkage refers to the bringing together of data from different sources to gain a greater understanding of a situation or individual from the combined (or linked) dataset. This facilitates a better understanding of the patterns of service use by groups of clients for research, statistical or policy analysis, planning and evaluation purposes. Its form is: XXXXXDDMMYYYYN The sequence in which the linkage key is completed is as follows: Family name (the first 3 Xs) Given name (the 4th and 5th X) Date of birth by day, month and four-digit year Sex XXX 2nd, 3rd and 5th letters of the family name. In the first three spaces the agency should record the 2nd, 3rd and 5th letters of the client’s family name. For example: If the client’s family name is Smith the reported value should be MIH. If the client’s family name is Jones the reported value should be ONS. Regardless of the length of a person’s name, the reported value should always be three characters long. If the legal family name is not long enough to supply the requested letters (i.e. a legal family name of less than five letters) then agencies should substitute the number ‘2’ to reflect the missing letters. The placement of a number ‘2’ should always correspond to the same space that the missing letter would have within the 3-digit field. A number (rather than a letter) is used for such a substitution in order to clearly indicate that an appropriate corresponding letter from the person’s name is not available. Cases where the family name has less than 5 letters: If a person’s family name is Farr, then value reported would be AR2 because the 2 is substituting for a missing 5th letter of the family name. Similarly, if the person’s family name was Hua, then the value reported would be UA2 because the 2 is substituting for the missing 5th letter of the family name. If a client’s family name is missing altogether the agency should record the number 999 for all three spaces associated with the family name, (not the number 2). In some cultures it is traditional to state the family name first. To overcome discrepancies in recording/reporting that may arise as a result of this practice, agencies should always ask the person to specify their legal first given name and their legal family name separately. These should then be recorded as first given name and family name as appropriate, regardless of the order in which they may be traditionally given. If the client’s family name includes non-alphabetic characters—for example hyphens (as in Lee-Archer), apostrophes (as in O’Mara) or blank spaces (as in De Vries)—these non-alphabetic characters should be ignored when counting the position of each character. XX 2nd and 3rd letters of given name In the fourth and fifth spaces the agency should record the 2nd and 3rd letters of the client’s given name. For example: If the client’s given name is Elizabeth the reported value should be LI. If the client’s given name is Robert the reported value should be OB. If the client’s given name includes non-alphabetic characters—for example hyphens (as in Jo-Anne) or apostrophes (as in D'Arcy), these non-alphabetic characters should be ignored when counting the position of each character. Regardless of the length of a person’s given name, the reported value should always be two characters long. If the given name of the person is not long enough to supply the requested letters (i.e. a name of less than three letters) then agencies should substitute the number ‘2’ to reflect the missing letters. The placement of a number ‘2’ should always correspond to the same space that the missing letter would have within the 2-digit field. A number (rather than a letter) is used for such substitutions in order to clearly indicate that an appropriate corresponding letter from the person’s name is not available. For example: If the person’s legal name was Jo then the value reported would be O2 because the 2 is substituting for the missing 3rd letter of the given name. If the person’s given name is missing altogether the agency should record 99 for the two spaces associated with the given name. In some cultures it is traditional to state the family name first. To overcome discrepancies in recording/reporting that may arise as a result of this practice, agencies should always ask the person to specify their given name and their family name separately. These should then be recorded as first given name and family name as appropriate, regardless of the order in which they may be traditionally given. Date of Birth DD represents the day in the month a person was born MM represents the month in the year a person was born YYYY represents the year a person was born If date of birth is not known or cannot be obtained, provision should be made to collect or estimate age. Collected or estimated age would usually be in years for adults and to the nearest three months (or less) for children aged less than two years. Additionally, an estimated date flag or a date accuracy indicator should be reported in conjunction with all estimated dates of birth. For data collections concerned with children's services, it is suggested that the estimated date of birth of children aged under 2 years should be reported to the nearest 3 month period, i.e. 0101, 0104, 0107, 0110 of the estimated year of birth. For example, a child who is thought to be aged 18 months in October of one year would have his/her estimated date of birth reported as 0104 of the previous year. Again, an estimated date flag or date accuracy indicator http://meteor.aihw.gov.au/content/index.phtml/ itemId/294429 should be reported in conjunction with all estimated dates of birth. Sex N represents whether or not the person is a 1. Male or 2. Female. Operationally, sex is the distinction between male and female, as reported by a person or as determined by an interviewer. When collecting data on sex by personal interview, asking the sex of the respondent is usually unnecessary and may be inappropriate, or even offensive. It is usually a simple matter to infer the sex of the respondent through observation, or from other cues such as the relationship of the person(s) accompanying the respondent, or first name. The interviewer may ask whether persons not present at the interview are male or female. A person's sex may change during their lifetime as a result of procedures known alternatively as sex change, gender reassignment, transsexual surgery, transgender reassignment or sexual reassignment. Throughout this process, which may be over a considerable period of time, the person's sex could be recorded as either Male or Female. In data collections that use the ICD-10-AM classification, where sex change is the reason for admission, diagnoses should include the appropriate ICD-10-AM code(s) that clearly identify that the person is undergoing such a process. This code(s) would also be applicable after the person has completed such a process, if they have a procedure involving an organ(s) specific to their previous sex (e.g. where the patient has prostate or ovarian cancer). Code 3 Intersex or indeterminate Is normally used for babies for whom sex has not been determined for whatever reason. Should not generally be used on data collection forms completed by the respondent. Should only be used if the person or respondent volunteers that the person is intersex or where it otherwise becomes clear during the collection process that the individual is neither male nor female. Code 9 Not stated/inadequately described Is not to be used on primary collection forms. It is primarily for use in administrative collections when transferring data from data sets where the item has not been collected. Data that has been produced by linkage for statistical and research purposes should not be used subsequently for client management purposes. This data cluster contains a set of specific data elements to be reported on in a predetermined combination. © Australian Institute of Health and Welfare 2015 Metadata and Classifications Unit Australian Institute of Health and Welfare GPO Box 570 Canberra ACT 2601

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