ID
12573
Descrizione
The main goals of the GRDR (Global Rare Diseases Patient Registry and Data Repository) CDE (Common Data Elements) effort are to: 1) develop a set of CDEs to facilitate data collection for the GRDR in a standardized and meaningful manner; 2) assist organizations that have no patient registry to establish a registry and be able to share data with the GRDR or other databases; 3) facilitate harmonization among the many organizations collecting patient information. NIH has developed Model Registry CDEs (ORDR CDEs) for patient data entry to be used in any rare disease registry, including a subset of CDEs (GRDR CDEs) to collect only de-identified information for the GRDR data repository. ODM derived from: https://ncats.nih.gov/grdr Permission to publish granted by Yaffa Rubinstein.
collegamento
Keywords
versioni (2)
- 02/12/15 02/12/15 - Julian Varghese
- 02/12/15 02/12/15 - Julian Varghese
Titolare del copyright
GRDR®
Caricato su
2 dicembre 2015
DOI
Per favore, per richiedere un accesso.
Licenza
Creative Commons BY-NC 3.0
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The GRDR® Registry Model Common Data Elements (CDEs)
The GRDR® Registry Model Common Data Elements (CDEs)
- StudyEvent: ODM
Descrizione
Socio-Demographic
Alias
- UMLS CUI-1
- C0011298
Descrizione
GRDR will collect only the year of birth. Source registry must collect year,month and day to assign the GUID ISO 8601 1=4-digit Gregorian year 2=2-digit for month and 2 digit for day-YYYY/MM/DD 3=GRDR will collect only the year of birth. Source registry must collect year,month and day to assign the GUID
Tipo di dati
integer
Alias
- UMLS CUI [1]
- C2348576
Descrizione
LOINC Yes/No/Refused/Don't Know 1 – Yes 2 – No 3 – Refused 4 – Don’t know
Tipo di dati
integer
Alias
- UMLS CUI [1]
- C1148433
Descrizione
NA If Vital Status "NO" ISO 8601 1=4-digit gregorian year
Tipo di dati
integer
Alias
- UMLS CUI [1]
- C1148348
Descrizione
Used by the registry to generate the GUID 1-Male 2-Female 3-Other 4-Transsexual 5-Unknown LOINC/NAACCR extended sex
Tipo di dati
integer
Alias
- UMLS CUI [1]
- C0679646
- UMLS CUI [2]
- C1522384
Descrizione
Race has two levels. The first level includes American Indian/Alaska Native, Asian, Black or African American, Native Hawaiian or Other Pacific Islander, White, and Other. The second level provides the option for more detailed Asian and Native Hawaiian or Other Pacific Islander assignment. In most cases, we expect that registries will map to the first level only. 1 – American Indian or Alaska Native 2 – Asian 3 – Asian Indian 4 – Chinese 5 – Filipino 6 – Japanese 7 – Korean 8 – Vietnamese 9 – Other Asian 10 – Black or African American 11 – Native Hawaiian or Other Pacific Islander 12 – Native Hawaiian 13 – Guamanian 14 – Chamorro 15 – Samoan 16 – Other Pacific Islander 17 – White 18 – Other/Unknown/Refuse to Answer LOINC Extended Race
Tipo di dati
integer
Alias
- UMLS CUI [1]
- C0679646
- UMLS CUI [2]
- C0034510
Descrizione
Ethnicity has two levels. The first level includes Hispanic or Latino, Non-Hispanic or Latino, Ashkenazi Jewish, and Unknown. The second level provides the option for more detailed Hispanic assignment. In most cases, we expect that registries will map to the first level only. 1 – Hispanic or Latino 2 – Central American 3 – Cuban 4 – Dominican (Republic) 5 – Mexican 6 – Puerto Rican 7 – South American 8 – Other Latin American 9 – Other Hispanic/Latino/Spanish 10 – Non-Hispanic or Latino 11 – Ashkenazi Jewish 12 – Unknown/No answer LOINC Ethnicity
Tipo di dati
integer
Alias
- UMLS CUI [1]
- C0015031
- UMLS CUI [2]
- C0679646
Descrizione
ISO 3166-1alpha-2 code Select the country code from the International Organization for Standardization (ISO)=Select the country code from the International Organization for Standardization (ISO)
Tipo di dati
text
Alias
- UMLS CUI [1]
- C0027473
Descrizione
ISO-3166 Select the country code from the International Organization for Standardization (ISO)=Select the country code from the International Organization for Standardization (ISO)
Tipo di dati
text
Alias
- UMLS CUI [1]
- C1300001
Descrizione
Sources will vary for non-US respondents Postal service state names and abbreviations 1=In USA, select from the US Postal Service state abbreviations 2=In Canada, select from Canada Addressing Guidelines 3=In other countries, use the postal service abbreviation for the appropriate state- or province-level region
Tipo di dati
text
Alias
- UMLS CUI [1]
- C1286281
Descrizione
Used by the registry to generate the GUID HL7 ST data type
Tipo di dati
text
Alias
- UMLS CUI [1]
- C0032040
Descrizione
LOINC Yes/No/Refused/Don't Know 1 – Yes 2 – No 3 – Refused 4 – Don’t know
Tipo di dati
integer
Alias
- UMLS CUI [1]
- C2029812
Descrizione
For health insurance coverage outside the USA, please select the categories that most closely describe the source of the participant's health insurance 1 Private health insurance 2 Medicare 3 Medi-gap 4 Medicaid 5 SCHIP (Childrens Health Insurance Program) 6 Military health care (Tricare/VA, Champ-VA) 7 Indian health service 8 State-sponsored health plan 9 Other government program 10 Single service plan (e.g. dental, vision, prescription) 11 No coverage 13 Dont know LOINC Insurance
Tipo di dati
integer
Alias
- UMLS CUI [1]
- C3172579
Descrizione
For participants receiving special educational services, please select the grade level assigned by their education provider. 1 - No schooling 2 - Preschool or nursery school 3 - Kindergarten 4 - 1st Grade 5 - 2nd Grade 6 - 3rd Grade 7 - 4th Grade 8 - 5th Grade 9 - 6th Grade 10 - 7th Grade 11 - 8th Grade 12 - 9th Grade 13 - 10th Grade 14 - 11th Grade 15 - 12th Grade 16 - GED 17 - College 30 - Don’t Know
Tipo di dati
integer
Alias
- UMLS CUI [1]
- C3258351
Descrizione
LOINC level of education 1 – Eighth grade or less 2 – More than eighth grade, but did not graduate from high school 3 – Went to a business, trade, or vocational school instead of high school 4 – High school graduate 5 – Completed a GED 6 – Went to a business, trade, or vocational school after high school 7 – Went to college, but did not graduate 8 – Graduated from a college or university 9 – Professional training beyond a four-year college or university 10 – He/she never went to school 11 – He/she went to school, but respondent doesn’t know what level 12 – Respondent doesn’t know if he/she went to school 13 – Refused 15 – Don’t know
Tipo di dati
integer
Alias
- UMLS CUI [1]
- C0013658
Descrizione
LOINC level of education 1 – Eighth grade or less 2 – More than eighth grade, but did not graduate from high school 3 – Went to a business, trade, or vocational school instead of high school 4 – High school graduate 5 – Completed a GED 6 – Went to a business, trade, or vocational school after high school 7 – Went to college, but did not graduate 8 – Graduated from a college or university 9 – Professional training beyond a four-year college or university 10 – He/she never went to school 11 – He/she went to school, but respondent doesn’t know what level 12 – Respondent doesn’t know if he/she went to school 13 – Refused 15 – Don’t know
Tipo di dati
integer
Alias
- UMLS CUI [1]
- C2924476
Descrizione
LOINC level of education 1 – Eighth grade or less 2 – More than eighth grade, but did not graduate from high school 3 – Went to a business, trade, or vocational school instead of high school 4 – High school graduate 5 – Completed a GED 6 – Went to a business, trade, or vocational school after high school 7 – Went to college, but did not graduate 8 – Graduated from a college or university 9 – Professional training beyond a four-year college or university 10 – He/she never went to school 11 – He/she went to school, but respondent doesn’t know what level 12 – Respondent doesn’t know if he/she went to school 13 – Refused 15 – Don’t know
Tipo di dati
integer
Alias
- UMLS CUI [1]
- C3260565
Descrizione
1 - Less than $10000 (USD) 2 - $10000 - $14999 3 - $15000 - $19999 4 - $20000 - $24999 5 - $25000 - $29999 6 - $30000 - $34999 7 - $35000 - $39999 8 - $40000 - $44999 9 - $45000 - $49999 10 - $50000 - $54999 11 - $55000 - $59999 12 - $60000 - $74999 13 - $75000 - $84999 14 - $85000 - $99999 15 - $100000 - $149999 16 - $150000 - $199999 17 - $200000 - $249999 18 - $250000 and above 19 - Unknown 20 - Decline to provide
Tipo di dati
integer
Alias
- UMLS CUI [1]
- C3166654
Descrizione
GRDR025 Household Size
Tipo di dati
integer
Alias
- UMLS CUI [1]
- C0682277
Descrizione
0 - Participant does not live in a group house 2 - 2 3 - 3 4 - 4 5 - 5 6 - 6 7 - 7 8 - 8 9 - 9 10 - 10 11 - 11 12 - 12 13 - 13 14 - 14 15 - 15 16 - 16 17 - 17 18 - 18 19 - 19 20 - 20 # Entered - Other- enter number
Tipo di dati
integer
Descrizione
Diagnosis
Alias
- UMLS CUI-1
- C0011900
Descrizione
Registries may wish to add "Other" with free text to capture additional data. Responses to these free text items will not be uploaded to the GRDR repository. Registry responses are mapped to SNOMED-CT concepts, and the GRDR stores the SNOMED-CT identifiers. SNOMED-CT Each registry pre-defines a set of diagnosis responses that are presented in the survey
Tipo di dati
text
Alias
- UMLS CUI [1]
- C0678236
Descrizione
-2 - Prenatal -1 - At birth 0 - Less than 1 year 1 - 89 age in years 90 - 90+ years -3 - Age of diagnosis unknown
Tipo di dati
integer
Alias
- UMLS CUI [1]
- C1828181
Descrizione
GRDR028 Age of Symptom Onset
Tipo di dati
integer
Alias
- UMLS CUI [1]
- C0150907
Descrizione
LOINC Registry responses are mapped to LOINC IDs, and the GRDR stores the LOINC identifiers. 0 - None Registries may wish to add "Other" with free text to capture additional data. Responses to these free text items will not be uploaded to the GRDR repository. Each registry pre-defines a set of diagnostic testing responses that are presented in the survey
Tipo di dati
text
Alias
- UMLS CUI [1]
- C0678236
- UMLS CUI [2]
- C0086143
Descrizione
Family History
Alias
- UMLS CUI-1
- C0241889
Descrizione
Participant-reported 0 - None 1 – Daughter 2 – Granddaughter 3 – Grandson 4 – Half-brother 5 – Half-sister 6 – Maternal Aunt 7 – Maternal Cousin 8 – Maternal Grandfather 9 – Maternal Grandmother 10 – Maternal Uncle 11 – Brother 12 – Father 13 – Mother 14 – Sister 15 – Nephew 16 – Niece 17 – Paternal Aunt 18 – Paternal Cousin 19 – Paternal Grandfather 20 – Paternal Grandmother 21 – Paternal Uncle 22 – Son LOINC Family Relationships
Tipo di dati
integer
Alias
- UMLS CUI [1]
- C0241889
- UMLS CUI [2]
- C0678236
Descrizione
The GRDR will record 2 values: 1. The weight (with units) reported by the registry 2. The weight in grams
Tipo di dati
integer
Alias
- UMLS CUI [1]
- C0005612
Descrizione
Units used for measurement of birth weight
Tipo di dati
text
Alias
- UMLS CUI [1]
- C1519795
Descrizione
1 – Yes 2 – No 3 – Refused 4 – Don’t know LOINC Yes/No/Refused/Don't Know
Tipo di dati
integer
Alias
- UMLS CUI [1]
- C2825543
- UMLS CUI [2]
- C0421451
Descrizione
-2 - 2 weeks late -1 - 1 week late 0 - On time 1 - 1 week premature 2 - 2 weeks premature 3 - 3 weeks premature 4 - 4 weeks premature 5 - 5 weeks premature 6 - 6 weeks premature 7 - 7 weeks premature 8 - 8 weeks premature 9 - 9 weeks premature 10 - 10 weeks premature 11 - 11 weeks premature 12 - 12 weeks premature 13 - 13 weeks premature 14 - 14 weeks premature 15 - 15 weeks premature 16 - 16 weeks premature 17 - 17 weeks premature 18 - 18 weeks premature 19 - 19 weeks premature 20 - 20 weeks premature If EGA at birth is available, use 40 - EGA
Tipo di dati
integer
Alias
- UMLS CUI [1]
- C0151526
- UMLS CUI [2]
- C3829314
Descrizione
GRDR052 Number of Pregnancies
Tipo di dati
integer
Alias
- UMLS CUI [1]
- C3812254
Descrizione
GRDR053 Number of Live Births
Tipo di dati
integer
Alias
- UMLS CUI [1]
- C2114487
Descrizione
GRDR054 Number of Living Children
Tipo di dati
integer
Alias
- UMLS CUI [1]
- C2114489
Descrizione
Anthropometric
Alias
- UMLS CUI-1
- C0003188
Descrizione
The GRDR will record 2 values: 1. The weight (with units) reported by the registry 2. The weight in grams
Tipo di dati
integer
Alias
- UMLS CUI [1]
- C0005910
Descrizione
Units used for weight measurement
Tipo di dati
text
Alias
- UMLS CUI [1]
- C1519795
Descrizione
Year + partial year in increments of 0.25 i.e 4 + 3-6months = 4.25yrs 4+ 6-9months=4.5yrs ...
Tipo di dati
float
Alias
- UMLS CUI [1]
- C0001779
- UMLS CUI [2]
- C0005910
Descrizione
"The GRDR will record 2 values: 1. The height (with units) reported by the registry 2. The height in centimeters "
Tipo di dati
integer
Alias
- UMLS CUI [1]
- C0005890
Descrizione
Units used for measurement of height
Tipo di dati
text
Alias
- UMLS CUI [1]
- C1519795
Descrizione
Year + partial year in increments of 0.25 i.e 4+3-6months=4.25yrs 4+6-9 months=4.5yrs ...
Tipo di dati
float
Alias
- UMLS CUI [1]
- C0001779
- UMLS CUI [2]
- C0005890
Descrizione
Patient reported outcome
Alias
- UMLS CUI-1
- C2987124
Descrizione
1- Excellent 2- Very good 3- Good 4- Fair 5- Poor PROMIS SF v1.0 - Global Health:
Tipo di dati
integer
Alias
- UMLS CUI [1]
- C0424575
Descrizione
1- Not at all 2- Very little 3- Somewhat 4- Quite a lot 5- Cannot do PROMIS SF v1.0 10a - Physical
Tipo di dati
integer
Alias
- UMLS CUI [1]
- C0516981
Descrizione
1- Not at all 2- A little bit 3- Somewhat 4- Quite a bit 5- Very much PROMIS SF v1.0 - Fatigue 6b:
Tipo di dati
integer
Alias
- UMLS CUI [1]
- C0030193
Descrizione
Never Rarely Sometimes Often Always PROMIS SF v1.0 - Fatigue 7a:
Tipo di dati
text
Alias
- UMLS CUI [1]
- C0015672
Descrizione
PROMIS SF v1.0 - Depression 8b: 1- Never 2- Rarely 3- Sometimes 4- Often 5- Always
Tipo di dati
integer
Alias
- UMLS CUI [1]
- C0344315
Descrizione
Devices and Health services
Alias
- UMLS CUI-1
- C0018747
Descrizione
Registries may wish to add "Other" with free text to capture additional data. Responses to these free text items will not be uploaded to the GRDR repository. Each registry defines a set of responses that are presented in the survey. Registry responses are mapped to RxNorm identifiers specifying the active ingredient(s) and route of administration. RxNorm
Tipo di dati
text
Alias
- UMLS CUI [1]
- C0746467
Descrizione
Registries may wish to add "Other" with free text to capture additional data. Responses to these free text items will not be uploaded to the GRDR repository. Each registry defines a set of responses that are presented in the survey. Registry responses are mapped to NDF-RT identifiers. National Drug File - Reference Terminology
Tipo di dati
text
Alias
- UMLS CUI [1]
- C1519433
Descrizione
Registries may wish to add "Other" with free text to capture additional data. Responses to these free text items will not be uploaded to the GRDR repository. Each registry pre-defines a set of diagnosis responses that are presented in the survey. Registry responses are mapped to SNOMED-CT surgery concepts, and the GRDR stores the SNOMED-CT identifiers. SNOMED-CT
Tipo di dati
text
Alias
- UMLS CUI [1]
- C0543467
Descrizione
1- Yes 2- No 3- Refused 4- Don't know
Tipo di dati
integer
Alias
- UMLS CUI [1]
- C0019993
Descrizione
GRDR041 Participant Hospitalization Count
Tipo di dati
integer
Descrizione
Registries may wish to add "Other" with free text to capture additional data. Responses to these free text items will not be uploaded to the GRDR repository. Each registry pre-defines a set of diagnosis responses that are presented in the survey. Registry responses are mapped to UMDNS identifiers Universal Medical Device Nomenclature System
Tipo di dati
text
Alias
- UMLS CUI [1]
- C0872018
Descrizione
Clinical Research Participation and Biospecimen
Alias
- UMLS CUI-1
- C0008972
- UMLS CUI-3
- C0679823
Descrizione
Yes No Refused Don’t know LOINC Yes/No/Refused/Don't Know
Tipo di dati
integer
Alias
- UMLS CUI [1]
- C2348568
Descrizione
LOINC Yes/No/Refused/Don't Know 1 – Yes 2 – No 3 – Refused 4 – Don’t know
Tipo di dati
integer
Alias
- UMLS CUI [1]
- C2348568
Descrizione
Yes No Refused Don’t know LOINC Yes/No/Refused/Don't Know
Tipo di dati
integer
Alias
- UMLS CUI [1]
- C2348568
Descrizione
Yes No Refused Don’t know LOINC Yes/No/Refused/Don't Know
Tipo di dati
integer
Alias
- UMLS CUI [1]
- C2347026
- UMLS CUI [2]
- C0080231
Descrizione
Yes No Refused Don’t know LOINC Yes/No/Refused/Don't Know
Tipo di dati
integer
Alias
- UMLS CUI [1]
- C2347026
Descrizione
Blood Saliva/Cheek Swab Urine Other bodily fluid Tissue N/A - No biospecimen donation
Tipo di dati
integer
Alias
- UMLS CUI [1]
- C2347029
Descrizione
HL7 TX data type
Tipo di dati
text
Alias
- UMLS CUI [1]
- C2347026
- UMLS CUI [2]
- C0019994
Descrizione
Contact and Communication Preferences
Alias
- UMLS CUI-1
- C1997600
Descrizione
HL7 ST data type Sign language Spoken language Written language http://www.hl7.org/
Tipo di dati
integer
Alias
- UMLS CUI [1]
- C1997600
Descrizione
E-mail Mail Phone http://www.hl7.org/
Tipo di dati
integer
Alias
- UMLS CUI [1]
- C1880174
Descrizione
Administrative
Alias
- UMLS CUI-1
- C1320722
Descrizione
This is not asked of registry participants, but generated by the source registry to indicate whether participant’s ID is a GUID or registry specific identifier
Tipo di dati
text
Alias
- UMLS CUI [1]
- C2985615
Descrizione
This is not asked of registry participants, but generated by the GRDR. The GRDR will develop and maintain a list of all source registries and use that to populate this field. Each source registry will be assigned a unique 8-digit code.
Tipo di dati
text
Alias
- UMLS CUI [1]
- C0804617
Descrizione
This is not asked of registry participants, but generated by the source registry. It is the date when the current registry record was updated or completed. Note that there can be multiple records for each participant, and the registry record date will help identify these temporally. Date including 4-digit year, month, day Date in ISO-8601 format: YYYY-MM-DD ISO 8601
Tipo di dati
date
Alias
- UMLS CUI [1]
- C0011008
Similar models
The GRDR® Registry Model Common Data Elements (CDEs)
- StudyEvent: ODM
C0850287 (UMLS CUI [2])
C0600420 (UMLS CUI [1,2])
C1522384 (UMLS CUI [2])
C0034510 (UMLS CUI [2])
C0679646 (UMLS CUI [2])
C0086143 (UMLS CUI [2])
C0678236 (UMLS CUI [2])
C0421451 (UMLS CUI [2])
C3829314 (UMLS CUI [2])
C0005910 (UMLS CUI [2])
C0005890 (UMLS CUI [2])
C0679823 (UMLS CUI-3)
C0080231 (UMLS CUI [2])
C0019994 (UMLS CUI [2])