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Table of contents
  1. 1. Clinical Trial
  2. 2. Routine Documentation
  3. 3. Registry/Cohort Study
  4. 4. Quality Assurance
  5. 5. Data Standard
  6. 6. Patient-Reported Outcome
  7. 7. Medical Specialty
    1. 7.1. Anesthesiology
    1. 7.2. Dermatology
    1. 7.3. ENT
    1. 7.4. Geriatrics
    1. 7.5. Gynecology/Obstetrics
    1. 7.6. Internal Medicine
      1. Hematology
      1. Infectious Diseases
      1. Cardiology/Angiology
      1. Pneumology
      1. Gastroenterology
      1. Nephrology
      1. Endocrinology/Metabolic Diseases
      1. Rheumatology
    1. 7.7. Neurology
    1. 7.8. Ophthalmology
    1. 7.9. Palliative Care
    1. 7.10. Pathology/Forensics
    1. 7.11. Pediatrics
    1. 7.12. Psychiatry/Psychosomatics
    1. 7.13. Radiology
    1. 7.14. Surgery
      1. General/Visceral Surgery
      1. Neurosurgery
      1. Plastic Surgery
      1. Thoracic Surgery
      1. Trauma/Orthopedics
      1. Vascular Surgery
    1. 7.15. Urology
    1. 7.16. Dental Medicine/OMS
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45 Search results.
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Personal History of Gastrointestinal Conditions Protocol PhenX Toolkit

- 9/20/21 - 1 form, 1 itemgroup, 10 items, 1 language
Itemgroup: 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.

Colorectal Procedures and Outcomes (Medical Record Review) Protocol PhenX Toolkit

- 9/20/21 - 1 form, 1 itemgroup, 85 items, 1 language
Itemgroup: PhenX - colorectal procedures and outcomes protocol
This measure uses existing medical records to obtain information about colorectal exams and procedures. 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.

Liver Function Assay Protocol PhenX Toolkit

- 4/26/16 - 1 form, 1 itemgroup, 15 items, 1 language
Itemgroup: PhenX - liver function assay protocol
A standard liver panel is comprised of the following bioassays that are performed on refrigerated serum or plasma: alanine aminotransferase (ALT), aspartate aminotransferase (AST), alkaline phosphatase (ALP), bilirubin, albumin, total protein, and gamma-glutamyl transferase (GGT). 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.

German Center for Diabetes Research (DZD) - Core Data Set - Base set

- 7/15/24 - 2 forms, 8 itemgroups, 147 items, 2 languages
Itemgroups: IG.1, IG.2, IG.3, IG.4, IG.5, IG.6, IG.7, Fragebogen
The German Center for Diabetes Research (DZD) has created a core data set for research on diabetes. It is published with permission by the DZD. The complete metadata and SOP are registered at DOI 10.5281/zenodo.7360000 For more information on the work of the DZD see: www.dzd-ev.de/en or contact: studien@dzd-ev.de German Center for Diabetes Research (DZD) Head Office at Helmholtz Zentrum München Ingolstädter Landstr. 1 85764 Neuherberg, Germany The German and English version of the Baecke Questionnaire in this core data set is based on the original paper by Baecke et al (https://doi.org/10.1093/ajcn/36.5.936), redistributed by ten Velde et al. (https://doi.org/10.1371/journal.pone.0256448), and the German translation and modification by Wagner & Singer (2003). The questionnaire was selectively modified by the German Diabetes Center (DDZ). Changes in this version 4 (15.07.2024) compared to version 3 (26.02.2024) include the addition of the parameters defined in the core data set of the German Centers for Health Research (DZG) (ID of MDM entry: 45851), the addition of laterality-specific blindness and an update of the terminology coding. The coding of the DZG parameters is currently under revision and not included in this current version. The coding of those DZG parameters that were already included in the DZD CDS will be provisionally retained.

Optional Set

3 itemgroups 46 items

26672_Common Data Elements Myeloid Leukemia (MDS AML CML) - Global Disease Course

- 9/20/21 - 13 forms, 3 itemgroups, 11 items, 1 language
Itemgroups: Global Disease Course, Red Cell Transfusion, Platelet Cell Transfusion
Common Data Elements Myeloid Leukemia (MDS, AML, CML) for use in clinical routine and clinical trial documentation. https://www.ncbi.nlm.nih.gov/pubmed/27577388

Physical Examination/Follow up

3 itemgroups 14 items

Administrative/Demographic Details

1 itemgroup 11 items

Medical History

3 itemgroups 9 items

Lab: Cytology/Cytogenetics/Cytochemistry

1 itemgroup 29 items

Lab: Immunophenotyping

1 itemgroup 17 items

Lab: Molecular Genetics

1 itemgroup 27 items

Acute Myeloid Leukemia - Treatment Details

- 9/20/21 - 13 forms, 6 itemgroups, 39 items, 1 language
Itemgroups: Therapeutic procedure; Details, Adverse Event, Hemopoietic stem cell transplant, Platelet Engraftment, Neutrophil Engraftment, Therapeutic procedure; Status
Acute Myeloid Leukemia Common Data Elements Holz

Medical History

6 itemgroups 20 items

Lab: Cytology/Cytogenetics/Cytochemistry

3 itemgroups 43 items

Lab: Molecular Genetics, Immunophenotyping, Cytogenetics

1 itemgroup 1 item

Physical Examination/Follow-up

4 itemgroups 27 items

Lab: Infectiology

1 itemgroup 11 items

Lab: Molecular Genetics

1 itemgroup 23 items

Serum Creatinine Assay Protocol PhenX Toolkit

- 4/26/16 - 1 form, 1 itemgroup, 9 items, 1 language
Itemgroup: 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.

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

- 9/7/16 - 1 form, 6 itemgroups, 47 items, 1 language
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

Diabetes (clinical) DSS Metadata Online Registry (METeOR)

- 9/2/16 - 1 form, 7 itemgroups, 52 items, 1 language
Itemgroups: Female, Health service event, Laboratory standard, Patient, Person (male), Person, Service contact
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) Diabetes (clinical) DSS The use of this standard is voluntary. However, if data is to be collected the Diabetes (clinical) Data Set Specification (DSS) aims to ensure national consistency in relation to defining, monitoring and recording information on patients diagnosed with diabetes. The Diabetes (clinical) DSS relates to the clinical status of, the provision of services for, and the quality of care delivered to individuals with diabetes, across all health care settings including: · General Practitioners; · Divisions of General Practice; · Diabetes Centres · Specialists in private practice; and · Community Health Nurses and Diabetes Educators. The Diabetes (clinical) DSS: · provides concise, unambiguous definitions for items/conditions related to diabetes quality care, and · aims to ensure standardised methodology of data collection in Australia. The expectation is that collection of this data set facilitates good quality of care, contributes to preventive care and has the potential to enhance self-management by patients with diabetes. The underlying goal is improvement of the length and quality of life of patients with diabetes, and prevention or delay in the development of diabetes related complications. © Australian Institute of Health and Welfare 2015 Metadata and Classifications Unit Australian Institute of Health and Welfare GPO Box 570 Canberra ACT 2601

Quality of Life as Affected by Respiratory Disease Protocol PhenX Toolkit

- 4/29/16 - 1 form, 1 itemgroup, 47 items, 1 language
Itemgroup: PhenX - respiratory - quality of life protocol
Self-administered questionnaire contains 50 items and 76 weighted responses divided into three components: Symptoms (frequency and severity); Activity (activities that cause or are limited by breathlessness); and Impacts (social unctioning, psychological disturbances resulting from airways disease). The protocol is designed to measure health impairment in patients with asthma and chronic obstructive pulmonary disease (COPD). It is also valid for use in bronchiectasis and has been used successfully in patients with kyphoscoliosis and sarcoidosis. 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.

Personal History of Allergies, Infectious Diseases, and Immunizations - Adult PhenX Toolkit

- 9/27/17 - 1 form, 7 itemgroups, 45 items, 1 language
Itemgroups: PhenX - personal medical history of allergies, infectious diseases, and immunizations - adult protocol, Noninfectious major illness, Doctor visit sequency, Hospitalization sequence, Surgery sequence, Lab or Imaging - Instance, Physical/​Occupational therapy sequence
This protocol is a self- or proxy-administered personal health record from the American Health Information Management Association (AHIMA). The respondent is asked to provide details on the following categories: Medical History, Infectious Diseases, Immunizations, Allergies/Drug Sensitivities, Health Log, Doctor Visits, Hospitalizations, Surgeries, Lab or Imaging, Medical Devices, and Physical/Occupational 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.

Personal Medical History of Allergies, Infectious Diseases, and Immunizations - Child PhenX Toolkit

- 4/26/16 - 1 form, 1 itemgroup, 21 items, 1 language
Itemgroup: PhenX - personal medical history of allergies, infectious diseases, and immunizations - child protocol
This protocol is a proxy-administered personal health record from the American Health Information Management Association (AHIMA). The parent or guardian is asked to provide details on the child in the following categories: Birth, Health Log, Allergies/Drug Sensitivities, Infectious Disease, and Immunizations. 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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