Data Dictionary Introduction - Performance Measurement Network Data Dictionary NHTSA v3.4.0 Build 200910 EMS Data Standard Version Date: September 10, 2020 . Data caretakers and users are responsible for actively using data dictionaries to correctly enter, select, and analyze data elements 5. A practical scale. 2016. However, in some studies recording date of birth may elicit discussions on a potential violation of privacy legislation and specifically HIPAA regulations. Return to work is a relevant outcome parameter in patients in paid workforce prior to injury. Assess, communicate and make decisions using the remaining components. }. The library below contains all common data elements and unique data elements. Category of ethnicity the participant/subject most closely identifies with, Hispanic or Latino;Not Hispanic or Latino;Not reported;Unknown, A person of Cuban, Mexican, Puerto Rican, South or Central American, or other Spanish culture or origin, regardless of race. Evaluation of the expressiveness of an ICNP-based nursing data dictionary in a computerized nursing record system. Journal of Head Trauma Rehabilitation, 8(3): 86-87. The AML specifications are guided by ADL Object Model (AOM) and include transformation mappings to seamlessly move between the ADL and AML. In these circumstances, the score is given as 1 with a modifier attached e.g. How many years of education does the subject have? The Reference Model Profile defines stereotypes to identify the ground rules for constraining a target UML model. . Glasgow Coma Scale (GCS) - verbal response scale, Score that describes the participant's verbal response according to the Glasgow Coma Scale (GCS), No verbal response/sounds;Incomprehensible sound;Inappropriate words;Confused;Oriented;Unknown;Untestable. TBI: Record the date/time according to the ISO 8601, the International Standard for the representation of dates and times (http: //www.iso.org/iso/home.html). Data Sharing Instructions: Cause of injury data should be coded using ICD external cause of injury codes prior to aggregation or sharing. How many years of education does the parent, guardian, or caregiver have? A data dictionary maps to an archetype, which is defined by constraining the reference archetype Cluster. Nature Genetics. You are trying to access a resource only available to AHIMA members. [March 10, 2016]; Available from: Open Health Tools Model-Driven Health Tools (MDHT) 2016. Firefox, Mappings for data types and value constraints, Mappings for terminology bindings and value set references. Date (and time, if applicable and known) on which the participant/subject (or the legal representative on behalf of the participant/subject) agrees to participate in a protocol, treatment, or other activity by signing an informed consent document. Disease/Injury Related Events.History of Disease/Injury Event;Assessments and Examinations.Physical/Neurological Examination, Assessments and Examinations.Physical/Neurological Examination, Disease/Injury Related Events.History of Disease/Injury Event, Glasgow Coma Scale (GCS) - motor response scale. Archives of Clinical Neuropsychology 24: 3-10. The participant's total Pediatric Glasgow Coma Scale (PGCS) score of 3 tests, eye, motor, and verbal responses. If clinically monitored, GCS or other assessment tool recommended. Sep 2004: 21(9): 1131-40. (1999). Glasgow Outcome Scale Extended (GOS-E) Pediatric Revision, The range of duration of post-traumatic amnesia the participant/subject experienced, 1-24 hours;1-29 minutes;1-7 days;<1 minute;>24 hours;30-59 minutes;30 minutes to 24 hours;>7 days;N/A;None;Unknown, 1-24 hours;1-29 minutes;1-7 days;<1 minute;>24 hours;30-59 minutes;30 minutes to 24 hours;>7 days;N/A (e.g., death);None;Unknown. The target type of these constraints is mapped to the AML Primitive and Data Value Types. 2010 Nov;91(11):1661-6. Data Dictionary Introduction TJC (v2022B) - Performance Measurement Network This would mean, for example, eyes closed because of swelling = 1, intubated = 1, leaving a motor score of 3 for 'abnormal flexion'. If post injury employment is an outcome, pre-injury employment is an important predictor. Data Dictionary | FITBIR - National Institutes of Health Gender may differ from the sex of an individual determined genetically. 1. Jan 2004;75(1): 161-2. and in the format acceptable to the study database The standard template enables users to define mandatory and optional variable definitions for a data dictionary. Added to TBI per meeting with FITBIR on 12/18/13. SNOMED CT Codes (https://www.nlm.nih.gov/healthit/snomedct/). Certificate and technical programs do NOT count no matter how specialized. position: relative; Do not report a total score when a component is Not Testable because the score will be low and this could be confusing to medical colleagues. Harmonization of detailed clinical models with clinical study data standards. Common data elements in radiologic imaging of traumatic brain injury. This element is recommended for Pediatric studies. Assessments and Examinations.Physical/Neurological Examination;Disease/Injury Related Events.History of Disease/Injury Event, Assessments and Examinations.Physical/Neurological Examination;Disease/Injury Related Events.Classification, Glasgow Coma Scale (GCS) - Total Score. This is an Open Access article: verbatim copying and redistribution of this article are permitted in all media for any purpose, Archetype Metadata: archetype library, identification, constrained RM class, archetype specialization, organization, copyright, version and author information, Constraint Definition: constraint identification, constrained type, values, multiplicity, value set, archetype reference, Terminology Bindings: archetype term definitions, references to standardized terminology resources like code systems, concepts, value set and value-set members, Prepare OpenRefine platform for configuration and validation of the Standard Template elements, Extend the import/export plugins of OpenRefine to load, transform and persist data dictionaries as AML archetypes, We have already implemented a prototype transform that transforms dbGaP data dictionary to OpenEHRs ADL format. Guidelines for Developing a Data Dictionary - AHIMA It has become common practice in clinical trial administration to use this modified version that places the scores in reverse order (i.e., good recovery = 1, moderate disability =2, etc.). If the subject obtained their education outside the United States, ask about their educational system to estimate the correct coding - Internship, Residency, and Fellowship years are experiential training and do not count. HIM 103 Sayles CHAPTER 6 DATA MANAGEMENT Flashcards Ruff R.M., Iverson G.L., Barth J.T., Bush S.S., Broshek D.K., and the NAN Policy and Planning Committee (2009). What is the subject's race (as defined by OMB)? J Neurol Neurosurg Psychiatry. Do not use number to record missing component; use Not testable . We plan to add these features without altering spreadsheet-like interface of OpenRefine intact. 2004;36(11): S28-S33. This section of the manual describes the data elements required to calculate category assignments and measurements for The Joint Commission's National Quality Measures. No eye opening;Eye opening to pain;Eye opening to speech;Eyes open spontaneously;Unknown;Untestable. This work was supported in part by funding from R01 GM105688, R01 GM103859 and a NCI U01 Project - caCDE-QA (U01 CA180940). This is probably more relevant to research than clinical practice. We previously implemented a set of extensions to OpenRefine known as D2Refine30. Document the specific diagnosis for each pre-existing neuro-musculoskeletal condition and document the location/anatomic site if not obvious. 1Mayo Clinic College of Medicine, Rochester, MN, 3Weill Cornell Medical College, New York, NY. 2010 Nov;91(11): 1661-6. J Neurol Neurosurg Psychiatry. These mappings were reviewed and verified by a panel of subject matter experts and the utility of the mappings was demonstrated by a successful transformation of a testing data dictionary into AML archetypes. Inclusion lists are limited to those terms that are believed to be most commonly used in record documentation. Data Elements for Registries - Registries for Evaluating Patient Genetic variation, classification and race . Carroll L. J., Cassidy J. D., Holm L., Kraus J., & Coronado V. G. (2004). For years completed, code the number of years attained (0-30 years), normed to someone moving full time at the usual pace, i.e. Protocol Experience.Off Treatment/Off Study. In additional to the primitive types, the CIMI Core Reference Model defines all kinds of (concrete) Data Value Types like COUNT, QUANTITY, CODED_TEXT and others. If so, these sources will be identified and labeled as "Excluded Data Sources", "ONLY ACCEPTABLE SOURCES", or "Priority Source". Certificate and technical programs do NOT count no matter how specialized. Response is obtained by report of the participant/subject or caretaker. World Health Organization. Gender is equated with phenotypic sex. What is the subjects race (as defined by OMB)? CIMI has specified a generic reference model, the CIMI Core Reference Model29 that underlies all archetypes published by the CIMI group. FA/MG: No references available, Pediatric Glasgow Coma Scale (PGCS) - eye response score. Response is obtained from report by subject/participant or clinician. BOLD TEXT indicates state required data element. CEO's Message Leading With Purpose: Driving Change in a Fractured Healthcare Environment By Amy Mosser, MBA 2016. The data dictionary underpins the exchange specifications by providing formal definitions. URIs etc.) This structure resembles with the CIMI Core Reference archetype Cluster (as shown in Figure1), which could be constrained to create almost any hierarchical collection. (Examples of CDEs included: Acute infarcts present; Planimetic acute ischemic lesion volume; and Acute hematoma present) Stocchetti N, Pagan F, Calappi E, et al. .accordion-content { Core Standards of the EUBIROD Project. Specify the status of the participant/ subject at his/her last study-related contact. Each variable definition is mapped to a leaf-level constraint node (modeled by further constraining the Cluster.Element). Acute SAH is hyperdense on CT and hyperintense on FLAIR MR imaging. Mushkudiani NA, Engel DC, Steyerberg EW, et al. GENERAL: The participants/subject is eligible for study enrollment if all the inclusion criteria are answered YES and all the exclusion criteria are answered NO or N/A. Refer to MedclHistCondSNOMEDCTCode Core CDE. A list of acceptable responses for this data element, Provided to assist the abstractor in the selection of an appropriate value for a data element. 2000;17: 573-581. Choose one. ----- Data elements fall into three broad categories in order to support a specific measure set. ----- Data Dictionary Introduction TJC - Performance Measurement Network The number of years of typical completion of the relevant program is counted. Core Health Data Elements: Report of the National Committee on - ASPE Suggested Data Sources are listed in alphabetical order, NOT priority order, unless otherwise specified in the data element. Date (and time, if applicable and known) the participant/subject is enrolled into the study. Outcomes and End Points.Activities of Daily Living/Performance;Outcomes and End Points.Other Clinical Data, Result of the global assessment of brain imaging, Duhaime AC, Gean AD, Haacke EM, Hicks R, Wintermark M, Mukherjee P, Brody D, Latour L, Riedy G; Common Data Elements Neuroimaging Working Group Members, Pediatric Working Group Members. Make sure to record if the following events are in the medical history which are Core items: Any stroke; Ischemic stroke; Hemorrhagic stroke; Hemorrhagic stroke type; 4) Transient ischemic attack (TIA); Carotid stenosis; Epilepsy/ Seizure disorder; Central nervous system infection; Dementia; Head trauma; Head trauma type; Atrial fibrillation (AF)/ flutter; Rheumatic heart disease National Health and Nutrition Examination Survey (http: //www.cdc.gov/nchs/nhanes.htm), Participant/Subject Characteristics.Social Status;Participant/Subject Characteristics.Demographics, Number of years of education completed (age 5 and beyond). Genetic variation, classification and "race". The NIH Guidelines on Inclusion of Women and Minorities as Subjects in Clinical Research: The Office of Management and Budget (OMB) Directive No. Definition: All data elements are clearly defined. Score for the participant's eye response according to the Pediatric Glasgow Coma Scale (PGCS) if the participant is under the age of 18. Methodological issues and research recommendations for mild traumatic brain injury: the WHO Collaborating Centre Task Force on Mild Traumatic Brain Injury. Collection = concentrates on how the data elements are being collected throughout the encounter. 2016. In certain sports studies where this is difficult to collect, investigators should justify why they aren't collecting this CDE. Journal of Magnetic Resonance Imaging 32, 516-543, DOI:10.1002/jmri.22259, Disease/Injury Related Events.Classification;Assessments and Examinations.Imaging Diagnostics, Sex participant or subject genotype other text. The informative section AML-UML Transformation Reference of OMG AML specifications, which describes core set of mappings between ADL and AML, guided the creation of these mappings. The simple format and easy-to-use interface has allowed researchers to customize and manage data with relative ease. Upper Good Recovery (Upper GR);Lower Good Recovery (Lower GR);Upper Moderate Disability (Upper MD);Lower Moderate Disability (Lower MD);Upper Severe Disability (Upper SD);Lower Severe Disability (Lower SD);Vegetative State (VS);Death. Examples of the General Core CDEs and forms include basic demographic information and basic enrollment data collected from all study participants. 'E1S' where 's' = swollen, or 'V1t' where t = tube. For a data dictionary, what we need to do is to map it to the Standard Template and to get it transformed into an AML archetype. Comprehensiveness: The data contains all required elements 4. Similar extension is required to implement the transformation to AML archetypes, Configure and extend OpenRefines reconciliation services with internal vocabulary terms and external terminological resources like NCIT, SNOMED CT, LOINC, caDSR and FHIR Profiles and their implementation, We have an Eclipse Modeling Framework (EMF). Staffing firms may label forms and reports with unique names or titles. SCI: Record one Medical History term per line. Choose one. ;A person having origins in any of the original peoples of the Far East, Southeast Asia, or the Indian subcontinent including, for example, Cambodia, China, India, Japan, Korea, Malaysia, Pakistan, the Philippine Islands, Thailand, and Vietnam. 2016. 5. a year that was repeated counts as only 1 year and the usual single-year full-time load completed over several years counts as 1 year. Lancet. Refer to Wilson (1998) for further information concerning administration and scoring, Glasgow Outcome Scale Extended (GOS-E) - scale. Protocol Experience.Participant/Subject Identification, Eligibility, and Enrollment, Date (and time, if applicable and known) the participant/subject's medical history was taken. NCI Thesaurus). 1998;88: 1303-1307. Indicate the time since injury occurred following definition provided per protocol. These model assertions, even when they are standardized with external vocabulary resources, almost always require additional transformations to be effective and semantically interoperable outside their local context. Pediatric Rehabilitation, 8(1): 5-16. A person having origins in any of the original peoples of North, Central, or South America, and who maintains tribal affiliations or community attachment. For identification, the data element name is. Previous surgeries due to any of the conditions should also be documented with this element. [July 5, 2016]; Available from: OpenEHRs ADL and AOM Specifications. Each level includes different components, but each component should be defined with the following properties: Feb 2007;24(2): 270-80. It evaluates three aspects of responsiveness: eye opening, motor response, verbal response. Beers SR, Wisniewski SR, Garcia-Filion P, Tian Y, Hahner T, Berger RP, Bell MJ, Adelson PD. ALS/DMD/GENERAL/MG/NMD/SCI/SMA/STROKE/TBI: SNOMED CT Codes (http: //www.nlm.nih.gov/research/umls/Snomed/snomed_main.html) The Constraint Profile defines a set of stereotypes that allows the specification of constraints (archetypes) on the target classes, properties and data types in a target UML model. Arch Phys Med Rehabil. 2012 Apr 10;29(6): 1126-39. This practice brief has been retired. J Neurotrauma. Currency: Data is current and up to date 6. D2Refine also provides built-in framework for implementing bidirectional transforms to store and manage data dictionaries using AML formalism. This may be the study completion visit or follow-up visit/phone call. Yeates K.O. Some of these data dictionaries include references to standard terminologies like NCI Thesaurus23 and Common Data Elements from Cancer Data Standard Registry and Repository (caDSR)24 already embedded in most of the models they define. MergedSet_Subject_Phenotypes.data_dict.xml, https://http://www.projects.openhealthtools.org/sf/projects/mdht/, NCI Thesaurus codes found, but other code systems could be used. These archetypes constrain the CIMI Core Reference Model and form the basis of all other archetypes published by the CIMI group. a year that was repeated counts as only 1 year and the usual single-year full-time load completed over several years counts as 1 year. FA: Self-reported gender of the participant/subject. 4. Definition of mild traumatic brain injury. Spinal Cord. It evaluates three aspects of responsiveness: eye opening, motor response, verbal response. [March 10, 2016]; Available from: Jiang G, Evans J, Oniki TA, Coyle JF, Bain L, Huff SM, et al. 2016. Indicator of whether informed consent was obtained for the participant/subject to participate in the clinical research study. PDF Data Elements in Electronic Health Records (EHRs) - Centers for Disease D2Refine includes features that can represent the Standard Template developed above. Chrome, Amer J of Publ Health. (2005). ;Not provided or unavailable;Could not be determined or unsure;A person having origins in any of the original peoples of Europe, the Middle East, or North Africa. Choose one. ----- American Indian or Alaska Native;Asian;Black or African-American;Native Hawaiian or Other Pacific Islander;Not Reported;Unknown;White. Sex chromosomes of the participant/subject based upon genotyping, Other, specify;Unknown;Unspecified;XX;XXX;XXY;XY;XYY, Other, specify;Unknown;Undifferentiated/Indeterminant/Intersex;XX;XXX;XXY;XY;XYY, Broad classification of the type of traumatic brain injury experienced by participant/subject, Indicator of the type of traumatic brain injury experienced by participant/subject, Different pathophysiologic mechanisms occur in different types of injury. SCI: Krassioukov A, Alexander MS, Karlsson AK, Donovan W, Mathias CJ, Bieringarensen F. International spinal cord injury cardiovascular function basic data set. The open-source EMF32 and Eclipse UML2 Libraries are essential to this task. Prognostic value of cause of injury in traumatic brain injury: results from the IMPACT study. STROKE:Contains data elements collected when an imaging study is performed to measure parenchyma; data recorded attempt to divide the strokes into ischemic or hemorrhagic subtypes, as distinction of hemorrhage versus infarction is the initial critical branch point in acute stroke triage. Jorde LB and Wooding SP. [DOI: 10.1016/j.apmr.2010.05.017] However, documentation that is not timed, dated or authenticated may still be used for abstraction if not required by the specific data element. The free-text field related to Sex participant or subject genotype type specifying other text. HEADACHE: Bhopal R and Donaldson L. White, European, Western, Caucasian, or What? EPILEPSY?FA/GENERAL/HEADASHE/MS/NMD/SMA/STROKE: Make sure to record if the following events are in the medical history which are Core items: Any stroke; Ischemic stroke; Hemorrhagic stroke; Hemorrhagic stroke type; 4) Transient ischemic attack (TIA); Carotid stenosis; Epilepsy/ Seizure disorder; Central nervous system infection; Dementia; Head trauma; Head trauma type; Atrial fibrillation (AF)/ flutter; Rheumatic heart disease FA: Enter all significant medical history items, including surgeries, EXCEPT the problem/condition that is the focus of this study. American Academy of Pediatrics. Geneva: World Health Organization. Prognostic value of demographic characteristics in traumatic brain injury: results from the IMPACT study. A data dictionary lists variable definitions with their names, data types, value ranges and binding to local and external resources, which is analogous to how an archetype is composed. Participant/Subject Characteristics.Social Status, Status of participant/subjects current attendance at school, Going to school;Neither;On vacation from school (between grades);Unknown. A composite might be 'GCS 5tc'. Prognostic value of the Glasgow Coma Scale and pupil reactivity in traumatic brain injury assessed pre-hospital and on enrolment: an IMPACT analysis. The Aggregate Data Dictionary describes the aggregate data elements required to be entered for each chart-abstracted measure. GENERAL: Record the date (and time) of the participant's/ subject's last study related-contact. Methodological issues and research recommendations for mild traumatic brain injury: the WHO Collaborating Centre Task Force on Mild Traumatic Brain Injury. This greatly minimizes the learning curve for users. Suggested Data Sources are listed by commonly used titles; however, information may be abstracted from any source that is equivalent to those listed. The lack of standardization of data dictionarys metadata elements presents challenges for their harmonization for similar studies and impedes interoperability outside the local context. The date (and time) should be recorded to the level of granularity known (e.g., year, year and month, complete date plus hours and minutes, etc.) Note that additional AML documentation includes 1) the AML specification in GitHub (including a collection of normative and non-normative formats of AML artifacts)25, the AML Archetype Examples26, the OpenEHRs ADL and AOM Specifications27 and an AML prototype project in GitHub28. Feb 2007;24(2): 259-69. The OpenRefines built-in reconciliation feature (which is extensible) allows users to link the values with external terminology services. We believe that we are on track to implement these features of D2Refine Workbench (Figure5) for real-world use cases in near future.