ID

12573

Description

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.

Link

https://ncats.nih.gov/grdr

Keywords

Versions (2)
  1. 12/2/15 12/2/15 - Julian Varghese
  2. 12/2/15 12/2/15 - Julian Varghese
Copyright Holder

GRDR®

Uploaded on

December 2, 2015

DOI

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License

Creative Commons BY-NC 3.0
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The GRDR® Registry Model Common Data Elements (CDEs)

English

The GRDR® Registry Model Common Data Elements (CDEs)

1 forms  
Current Contact Information
Description

Current Contact Information

Participant first name as recorded in birth certificate or passport
Description

HL7 ST data type

Data type

text

Alias
UMLS CUI [1]
C1443235
Participant last name as recorded in birth certificate or passport
Description

HL7 ST data type

Data type

text

Alias
UMLS CUI [1]
C1301584
Participant middle name as recorded in birth certificate or passport
Description

In cases when not applicable indicate NA HL7 ST data type

Data type

text

Alias
UMLS CUI [1]
C1320720
Street address where the participant resides
Description

HL7 ST data type

Data type

text

Alias
UMLS CUI [1]
C1301826
City, town or village where the participant resides
Description

HL7 ST data type

Data type

text

Alias
UMLS CUI [1]
C2316883
What is the state or province part of the participant’s address?
Description

HL7 ST data type 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

Data type

text

Alias
UMLS CUI [1]
C1830433
What is the zip/postal code of the participant’s address?
Description

Truncated to the first 3 digits (for U.S. ZIP) and possibly redacted, if 3-digit prefix spans an area with population <20,000. USPS 3-Digit Zip Code Prefix Matrix 1=In USA, 3-digit prefix of US Postal ZIP Code

Data type

text

Alias
UMLS CUI [1]
C1514254
What is the country part of the participant’s address?
Description

ISO-3166 1=Select the 2-character country code from the International Organization for Standardization

Data type

text

Alias
UMLS CUI [1]
C1562954
What is the participant's email address?
Description

In cases when not applicable indicate NA

Data type

text

Alias
UMLS CUI [1]
C1705961
What is the primary telephone number of the participant?
Description

HL7 TN data type

Data type

integer

Alias
UMLS CUI [1]
C2825559
Is data entered by anyone other than the participant?
Description

1-Yes 2-No LOINC Yes/No

Data type

boolean

Alias
UMLS CUI [1]
C0557514
Name of person entering data in the registry
Description

HL7 ST data type

Data type

text

Alias
UMLS CUI [1]
C3258039
Did the participant provide the information for this registry update?
Description

"1 – Yes 2 – No 3 – Refused 4 – Don’t know" LOINC Yes/No/Refused/Don't Know

Data type

integer

Alias
UMLS CUI [1]
C0036588
UMLS CUI [2]
C0850287
What is the relationship of the person answering questions for the participant?
Description

"1 - Self 2 - Parent (biologic, adoptive, or step) 3 - Grandparent 4 - Spouse 5 - Aunt/Uncle 6 - Brother/Sister 7 - Other relative 8 - Legal guardian 9 - Foster parent 10 - Medical caregiver 11 - Other non-relative 12 - Refused 13 - Don't know"

Data type

integer

Alias
UMLS CUI [1,1]
C0439849
UMLS CUI [1,2]
C0600420
If the participant is 18 years or older, was consent given to enter participant's data?
Description

1 - Yes 2 - No LOINC Yes/No

Data type

integer

Alias
UMLS CUI [1]
C0021430
If the participant is less than 18 years, or if the participant is not competent to provide consent, was assent given by participant to enter participant's data?
Description

Some local IRBs may not require assent 1 - Yes 2 - No 0 - Participant gives own consent -1 - Participant is unable to assent" LOINC Yes/No

Data type

integer

Alias
UMLS CUI [1]
C1879749
Socio-Demographic
Description

Socio-Demographic

Alias
UMLS CUI-1
C0011298
What is the participant’s date of birth as shown on his/her birth certificate or passport?
Description

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

Data type

integer

Alias
UMLS CUI [1]
C2348576
Has the participant died?
Description

LOINC Yes/No/Refused/Don't Know 1 – Yes 2 – No 3 – Refused 4 – Don’t know

Data type

integer

Alias
UMLS CUI [1]
C1148433
What was the year the participant died, as shown on their death certificate?
Description

NA If Vital Status "NO" ISO 8601 1=4-digit gregorian year

Data type

integer

Alias
UMLS CUI [1]
C1148348
What is the participant’s sex?
Description

Used by the registry to generate the GUID 1-Male 2-Female 3-Other 4-Transsexual 5-Unknown LOINC/NAACCR extended sex

Data type

integer

Alias
UMLS CUI [1]
C0679646
UMLS CUI [2]
C1522384
What is the participant’s race?
Description

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

Data type

integer

Alias
UMLS CUI [1]
C0679646
UMLS CUI [2]
C0034510
Is the participant of Hispanic, Latino or Spanish origin?
Description

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

Data type

integer

Alias
UMLS CUI [1]
C0015031
UMLS CUI [2]
C0679646
The name of the country from which a person or their biological family had previous residence or past ancestors.
Description

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)

Data type

text

Alias
UMLS CUI [1]
C0027473
In which country was the participant born, as shown on his/her birth certificate?
Description

ISO-3166 Select the country code from the International Organization for Standardization (ISO)=Select the country code from the International Organization for Standardization (ISO)

Data type

text

Alias
UMLS CUI [1]
C1300001
In which state or province was the participant born, as shown on his/her birth certificate?
Description

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

Data type

text

Alias
UMLS CUI [1]
C1286281
What is the name of the city, town or village of the participant's birth (as it appears on the birth certificate)?
Description

Used by the registry to generate the GUID HL7 ST data type

Data type

text

Alias
UMLS CUI [1]
C0032040
Is the participant covered by any kind of health insurance or some other kind of health care plan?
Description

LOINC Yes/No/Refused/Don't Know 1 – Yes 2 – No 3 – Refused 4 – Don’t know

Data type

integer

Alias
UMLS CUI [1]
C2029812
What type of health insurance does the participant currently have? (Select all that apply.)
Description

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

Data type

integer

Alias
UMLS CUI [1]
C3172579
If the participant is less than 18 years old, what is the highest grade the participant has started?
Description

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

Data type

integer

Alias
UMLS CUI [1]
C3258351
If the participant is 18 years or older, what is the highest grade or level of school the participant has completed or the highest degree the participant has received?
Description

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

Data type

integer

Alias
UMLS CUI [1]
C0013658
What is the highest level of education the participant's mother finished?
Description

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

Data type

integer

Alias
UMLS CUI [1]
C2924476
What is the highest level of education the participant’s father finished?
Description

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

Data type

integer

Alias
UMLS CUI [1]
C3260565
What is the annual gross income for the household in which the participant lives (in U.S. dollars)?
Description

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

Data type

integer

Alias
UMLS CUI [1]
C3166654
How many people (including the participant) currently live in the participant’s house, apartment, or mobile home?
Description

GRDR025 Household Size

Data type

integer

Alias
UMLS CUI [1]
C0682277
If the participant lives in a group house, how many people live in the group house including participant?
Description

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

Data type

integer

Diagnosis
Description

Diagnosis

Alias
UMLS CUI-1
C0011900
What is the participant’s rare disease diagnosis?
Description

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

Data type

text

Alias
UMLS CUI [1]
C0678236
What was the participant's age in years when the formal diagnosis was made?
Description

-2 - Prenatal -1 - At birth 0 - Less than 1 year 1 - 89 age in years 90 - 90+ years -3 - Age of diagnosis unknown

Data type

integer

Alias
UMLS CUI [1]
C1828181
What was the participant's age in years when they first began experiencing symptoms of the rare disease?
Description

GRDR028 Age of Symptom Onset

Data type

integer

Alias
UMLS CUI [1]
C0150907
What test(s) did physicians or other health professionals do to make the rare disease diagnosis? (Select all that apply.)
Description

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

Data type

text

Alias
UMLS CUI [1]
C0678236
UMLS CUI [2]
C0086143
Family History
Description

Family History

Alias
UMLS CUI-1
C0241889
Which family members also are known to have the participant’s rare disease?
Description

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

Data type

integer

Alias
UMLS CUI [1]
C0241889
UMLS CUI [2]
C0678236
How much did the participant weigh when he/she was born?
Description

The GRDR will record 2 values: 1. The weight (with units) reported by the registry 2. The weight in grams

Data type

integer

Alias
UMLS CUI [1]
C0005612
Units used for measurement of birth weight
Description

Units used for measurement of birth weight

Data type

text

Alias
UMLS CUI [1]
C1519795
Was the participant born at or close to his/her due date?
Description

1 – Yes 2 – No 3 – Refused 4 – Don’t know LOINC Yes/No/Refused/Don't Know

Data type

integer

Alias
UMLS CUI [1]
C2825543
UMLS CUI [2]
C0421451
How many weeks away from his/her due date was the participant born?
Description

-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

Data type

integer

Alias
UMLS CUI [1]
C0151526
UMLS CUI [2]
C3829314
For adult female participants, what is the total number of pregnancies, including living children, deceased children, and abortions (spontaneous and therapeutic)?
Description

GRDR052 Number of Pregnancies

Data type

integer

Alias
UMLS CUI [1]
C3812254
For adult female participants, what is the number of live births?
Description

GRDR053 Number of Live Births

Data type

integer

Alias
UMLS CUI [1]
C2114487
What is the number of living children of the participant?
Description

GRDR054 Number of Living Children

Data type

integer

Alias
UMLS CUI [1]
C2114489
Anthropometric
Description

Anthropometric

Alias
UMLS CUI-1
C0003188
What is the participant's most recent weight?
Description

The GRDR will record 2 values: 1. The weight (with units) reported by the registry 2. The weight in grams

Data type

integer

Alias
UMLS CUI [1]
C0005910
Units used for weight measurement
Description

Units used for weight measurement

Data type

text

Alias
UMLS CUI [1]
C1519795
How old was the participant when this weight was measured?
Description

Year + partial year in increments of 0.25 i.e 4 + 3-6months = 4.25yrs 4+ 6-9months=4.5yrs ...

Data type

float

Alias
UMLS CUI [1]
C0001779
UMLS CUI [2]
C0005910
What is the participant's most recent height?
Description

"The GRDR will record 2 values: 1. The height (with units) reported by the registry 2. The height in centimeters "

Data type

integer

Alias
UMLS CUI [1]
C0005890
Units used for measurement of height
Description

Units used for measurement of height

Data type

text

Alias
UMLS CUI [1]
C1519795
How old was the participant when this height was measured?
Description

Year + partial year in increments of 0.25 i.e 4+3-6months=4.25yrs 4+6-9 months=4.5yrs ...

Data type

float

Alias
UMLS CUI [1]
C0001779
UMLS CUI [2]
C0005890
Patient reported outcome
Description

Patient reported outcome

Alias
UMLS CUI-1
C2987124
In general, would the participant say his/her health is…
Description

1- Excellent 2- Very good 3- Good 4- Fair 5- Poor PROMIS SF v1.0 - Global Health:

Data type

integer

Alias
UMLS CUI [1]
C0424575
Does the participant's health now limit him/her in doing vigorous activities?
Description

1- Not at all 2- Very little 3- Somewhat 4- Quite a lot 5- Cannot do PROMIS SF v1.0 10a - Physical

Data type

integer

Alias
UMLS CUI [1]
C0516981
How much did pain interfere with the participant's enjoyment of life?
Description

1- Not at all 2- A little bit 3- Somewhat 4- Quite a bit 5- Very much PROMIS SF v1.0 - Fatigue 6b:

Data type

integer

Alias
UMLS CUI [1]
C0030193
How often does the participant feel tired?
Description

Never Rarely Sometimes Often Always PROMIS SF v1.0 - Fatigue 7a:

Data type

text

Alias
UMLS CUI [1]
C0015672
The participant feels depressed…
Description

PROMIS SF v1.0 - Depression 8b: 1- Never 2- Rarely 3- Sometimes 4- Often 5- Always

Data type

integer

Alias
UMLS CUI [1]
C0344315
Devices and Health services
Description

Devices and Health services

Alias
UMLS CUI-1
C0018747
What are the medications that this participant is currently taking?
Description

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

Data type

text

Alias
UMLS CUI [1]
C0746467
Does the participant take any medical foods or follow a special diet for treatment of his/her rare disease?
Description

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

Data type

text

Alias
UMLS CUI [1]
C1519433
Has the participant had any of the following surgeries to treat his/her rare disease?
Description

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

Data type

text

Alias
UMLS CUI [1]
C0543467
Has the participant ever been admitted to the hospital due to this rare disease or condition?
Description

1- Yes 2- No 3- Refused 4- Don't know

Data type

integer

Alias
UMLS CUI [1]
C0019993
In the past 12 months, how many times has the participant been admitted to a hospital due to their condition?
Description

GRDR041 Participant Hospitalization Count

Data type

integer

Does the participant use any type of medical or assistive device to help them move around, communicate, or do things?
Description

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

Data type

text

Alias
UMLS CUI [1]
C0872018
Clinical Research Participation and Biospecimen
Description

Clinical Research Participation and Biospecimen

Alias
UMLS CUI-1
C0008972
UMLS CUI-3
C0679823
Has the participant previously participated in any clinical trials related to their rare disease?
Description

Yes No Refused Don’t know LOINC Yes/No/Refused/Don't Know

Data type

integer

Alias
UMLS CUI [1]
C2348568
Does the participant currently participate in any clinical trials related to their rare disease?
Description

LOINC Yes/No/Refused/Don't Know 1 – Yes 2 – No 3 – Refused 4 – Don’t know

Data type

integer

Alias
UMLS CUI [1]
C2348568
Is the participant willing to be contacted in the future about research related to their rare disease?
Description

Yes No Refused Don’t know LOINC Yes/No/Refused/Don't Know

Data type

integer

Alias
UMLS CUI [1]
C2348568
Is the participant willing to be contacted about donating a sample of blood, tissue, or other biospecimen for research in the future?
Description

Yes No Refused Don’t know LOINC Yes/No/Refused/Don't Know

Data type

integer

Alias
UMLS CUI [1]
C2347026
UMLS CUI [2]
C0080231
Has the participant donated a sample of blood, tissue, or other biospecimen for research in the past?
Description

Yes No Refused Don’t know LOINC Yes/No/Refused/Don't Know

Data type

integer

Alias
UMLS CUI [1]
C2347026
If a biospecimen was donated in the past, what type was it?
Description

Blood Saliva/Cheek Swab Urine Other bodily fluid Tissue N/A - No biospecimen donation

Data type

integer

Alias
UMLS CUI [1]
C2347029
What is the name of the hospital/clinic where the biospecimen was donated?
Description

HL7 TX data type

Data type

text

Alias
UMLS CUI [1]
C2347026
UMLS CUI [2]
C0019994
Contact and Communication Preferences
Description

Contact and Communication Preferences

Alias
UMLS CUI-1
C1997600
How does the participant prefer to communicate?
Description

HL7 ST data type Sign language Spoken language Written language http://www.hl7.org/

Data type

integer

Alias
UMLS CUI [1]
C1997600
How does the participant prefer to be contacted?
Description

E-mail Mail Phone http://www.hl7.org/

Data type

integer

Alias
UMLS CUI [1]
C1880174
Administrative
Description

Administrative

Alias
UMLS CUI-1
C1320722
GRDR002 Participant Identifier Source
Description

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

Data type

text

Alias
UMLS CUI [1]
C2985615
GRDR003 Source Registry
Description

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.

Data type

text

Alias
UMLS CUI [1]
C0804617
GRDR004 Registry Record Date
Description

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

Data type

date

Alias
UMLS CUI [1]
C0011008
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The GRDR® Registry Model Common Data Elements (CDEs)

1 forms
Name
Type
Description | Question | Decode (Coded Value)
Data type
Alias
Item Group
Current Contact Information
First name of Participant GUID
Item
Participant first name as recorded in birth certificate or passport
text
C1443235 (UMLS CUI [1])
Last name of participant
Item
Participant last name as recorded in birth certificate or passport
text
C1301584 (UMLS CUI [1])
Middle Name of Participant GUID
Item
Participant middle name as recorded in birth certificate or passport
text
C1320720 (UMLS CUI [1])
Participant Street Address
Item
Street address where the participant resides
text
C1301826 (UMLS CUI [1])
Participant City
Item
City, town or village where the participant resides
text
C2316883 (UMLS CUI [1])
GRDR005 State of Participant’s Residence
Item
What is the state or province part of the participant’s address?
text
C1830433 (UMLS CUI [1])
Item
What is the zip/postal code of the participant’s address?
text
C1514254 (UMLS CUI [1])
GRDR006 Zip/Postal Code of Participant’s Residence
Code List
What is the zip/postal code of the participant’s address?
Item
What is the country part of the participant’s address?
text
C1562954 (UMLS CUI [1])
GRDR007 Country of Participant’s Residence
Code List
What is the country part of the participant’s address?
Participant Email Address
Item
What is the participant's email address?
text
C1705961 (UMLS CUI [1])
Participant Primary Telephone Number
Item
What is the primary telephone number of the participant?
integer
C2825559 (UMLS CUI [1])
Registrar
Item
Is data entered by anyone other than the participant?
boolean
C0557514 (UMLS CUI [1])
Name of Registrar
Item
Name of person entering data in the registry
text
C3258039 (UMLS CUI [1])
Item
Did the participant provide the information for this registry update?
integer
C0036588 (UMLS CUI [1])
C0850287 (UMLS CUI [2])
GRDR008 Record of Self Completion
Code List
Did the participant provide the information for this registry update?
CL Item
Yes (1)
CL Item
No (2)
CL Item
Refused (3)
CL Item
Don´t know (4)
Item
What is the relationship of the person answering questions for the participant?
integer
C0439849 (UMLS CUI [1,1])
C0600420 (UMLS CUI [1,2])
GRDR009 Proxy Relationship to Participant
Code List
What is the relationship of the person answering questions for the participant?
CL Item
Self (1)
CL Item
Parent (biologic, adoptive, or step) (2)
CL Item
Grandparent (3)
CL Item
Spouse (4)
CL Item
Aunt/Uncle (5)
CL Item
Brother/Sister (6)
CL Item
Other relative (7)
CL Item
Legal guardian (8)
CL Item
Foster parent (9)
CL Item
Medical caregiver (10)
CL Item
Other non-relative (11)
CL Item
Refused (12)
CL Item
Don't know (13)
Item
If the participant is 18 years or older, was consent given to enter participant's data?
integer
C0021430 (UMLS CUI [1])
Consent
Code List
If the participant is 18 years or older, was consent given to enter participant's data?
CL Item
Yes (1)
CL Item
No (2)
CL Item
N/A - Participant is younger than 18 years" (3)
Item
If the participant is less than 18 years, or if the participant is not competent to provide consent, was assent given by participant to enter participant's data?
integer
C1879749 (UMLS CUI [1])
Assent
Code List
If the participant is less than 18 years, or if the participant is not competent to provide consent, was assent given by participant to enter participant's data?
CL Item
Yes (1)
CL Item
No (2)
CL Item
Participant gives own consent (3)
CL Item
Participant is unable to assent (4)
Item Group
Socio-Demographic
C0011298 (UMLS CUI-1)
GRDR010 Participant date of Birth GUID
Item
What is the participant’s date of birth as shown on his/her birth certificate or passport?
integer
C2348576 (UMLS CUI [1])
Item
Has the participant died?
integer
C1148433 (UMLS CUI [1])
GRDR011 Vital Status
Code List
Has the participant died?
CL Item
Yes (1)
CL Item
No (2)
CL Item
Refused (3)
CL Item
Don’t know" (4)
Item
What was the year the participant died, as shown on their death certificate?
integer
C1148348 (UMLS CUI [1])
Year of Death
Code List
What was the year the participant died, as shown on their death certificate?
Item
What is the participant’s sex?
integer
C0679646 (UMLS CUI [1])
C1522384 (UMLS CUI [2])
GRDR013 Sex of Participant GUID-Optional
Code List
What is the participant’s sex?
CL Item
Male (1)
CL Item
Female (2)
CL Item
Other (3)
CL Item
Transsexual (4)
CL Item
Unknown (5)
Item
What is the participant’s race?
integer
C0679646 (UMLS CUI [1])
C0034510 (UMLS CUI [2])
GRDR014 Race of Participant
Code List
What is the participant’s race?
CL Item
"American Indian or Alaska Native (1)
CL Item
Asian (2)
CL Item
– Asian Indian (3)
CL Item
– Chinese (4)
CL Item
– Filipino  (5)
CL Item
– Japanese (6)
CL Item
– Korean (7)
CL Item
– Vietnamese (8)
CL Item
– Other Asian (9)
CL Item
Black or African American (10)
CL Item
Native Hawaiian or Other Pacific Islander (11)
CL Item
– Native Hawaiian (12)
CL Item
– Guamanian (13)
CL Item
– Chamorro (14)
CL Item
– Samoan (15)
CL Item
– Other Pacific Islander (16)
CL Item
White (17)
CL Item
Other/Unknown/Refuse to Answer" (18)
Item
Is the participant of Hispanic, Latino or Spanish origin?
integer
C0015031 (UMLS CUI [1])
C0679646 (UMLS CUI [2])
GRDR015 Ethnicity of Participant
Code List
Is the participant of Hispanic, Latino or Spanish origin?
CL Item
"Hispanic or Latino (1)
CL Item
– Central American (2)
CL Item
– Cuban (3)
CL Item
– Dominican (Republic) (4)
CL Item
– Mexican (5)
CL Item
– Puerto Rican (6)
CL Item
– South American (7)
CL Item
– Other Latin American (8)
CL Item
– Other Hispanic/Latino/Spanish (9)
CL Item
Non-Hispanic or Latino (10)
CL Item
Ashkenazi Jewish (11)
CL Item
Unknown/No answer" (12)
Item
The name of the country from which a person or their biological family had previous residence or past ancestors.
text
C0027473 (UMLS CUI [1])
GRDR050 Nationality
Code List
The name of the country from which a person or their biological family had previous residence or past ancestors.
GRDR016 Country of Birth GUID
Item
In which country was the participant born, as shown on his/her birth certificate?
text
C1300001 (UMLS CUI [1])
GRDR017 State or Province of Birth
Item
In which state or province was the participant born, as shown on his/her birth certificate?
text
C1286281 (UMLS CUI [1])
City, Town or Village of Birth GUID
Item
What is the name of the city, town or village of the participant's birth (as it appears on the birth certificate)?
text
C0032040 (UMLS CUI [1])
Item
Is the participant covered by any kind of health insurance or some other kind of health care plan?
integer
C2029812 (UMLS CUI [1])
GRDR018 Health Insurance Coverage
Code List
Is the participant covered by any kind of health insurance or some other kind of health care plan?
CL Item
Yes (1)
CL Item
No (2)
CL Item
Refused (3)
CL Item
Don’t know (4)
Item
What type of health insurance does the participant currently have? (Select all that apply.)
integer
C3172579 (UMLS CUI [1])
"GRDR019 Health Insurance Type"
Code List
What type of health insurance does the participant currently have? (Select all that apply.)
CL Item
Private health insurance (1)
CL Item
Medicare (2)
CL Item
Medi-gap (3)
CL Item
Medicaid (4)
CL Item
SCHIP (Childrens Health Insurance Program) (5)
CL Item
Military health care (Tricare/VA, Champ-VA)  (6)
CL Item
Indian health service (7)
CL Item
State-sponsored health plan (8)
CL Item
Other government program (9)
CL Item
Single service plan (e.g. dental, vision, prescription) (10)
CL Item
No coverage (11)
CL Item
Dont know (12)
Item
If the participant is less than 18 years old, what is the highest grade the participant has started?
integer
C3258351 (UMLS CUI [1])
"GRDR020 Grade Level"
Code List
If the participant is less than 18 years old, what is the highest grade the participant has started?
CL Item
"No schooling (1)
CL Item
Preschool or nursery school Kindergarten (2)
CL Item
1st Grade (3)
CL Item
2nd Grade (4)
CL Item
3rd Grade (5)
CL Item
4th Grade (6)
CL Item
5th Grade (7)
CL Item
6th Grade (8)
CL Item
7th Grade (9)
CL Item
8th Grade (10)
CL Item
9th Grade (11)
CL Item
10th Grade (12)
CL Item
11th Grade (13)
CL Item
12th Grade (14)
CL Item
GED (15)
CL Item
College (16)
CL Item
Don’t Know (17)
CL Item
N/A - Participant is 18 years or older" (18)
Item
If the participant is 18 years or older, what is the highest grade or level of school the participant has completed or the highest degree the participant has received?
integer
C0013658 (UMLS CUI [1])
"GRDR021 Educational Attainment"
Code List
If the participant is 18 years or older, what is the highest grade or level of school the participant has completed or the highest degree the participant has received?
CL Item
Eighth grade or less (1)
CL Item
More than eighth grade, but did not graduate from high school (2)
CL Item
Went to a business, trade, or vocational school instead of high school (3)
CL Item
High school graduate (4)
CL Item
Completed a GED (5)
CL Item
Went to a business, trade, or vocational school after high school (6)
CL Item
Went to college, but did not graduate (7)
CL Item
Graduated from a college or university (8)
CL Item
Professional training beyond a four-year college or university (9)
CL Item
He/she never went to school (10)
CL Item
He/she went to school, but respondent doesn’t know what level (11)
CL Item
Respondent doesn’t know if he/she went to school (12)
CL Item
Refused (13)
CL Item
Don’t know (14)
CL Item
N/A - Participant is younger than 18 years (15)
Item
What is the highest level of education the participant's mother finished?
integer
C2924476 (UMLS CUI [1])
GRDR022 Maternal Educational Attainment
Code List
What is the highest level of education the participant's mother finished?
CL Item
Eighth grade or less (1)
CL Item
More than eighth grade, but did not graduate from high school (2)
CL Item
Went to a business, trade, or vocational school instead of high school (3)
CL Item
High school graduate (4)
CL Item
Completed a GED (5)
CL Item
Went to a business, trade, or vocational school after high school (6)
CL Item
Went to college, but did not graduate (7)
CL Item
Graduated from a college or university (8)
CL Item
Professional training beyond a four-year college or university (9)
CL Item
He/she never went to school (10)
CL Item
He/she went to school, but respondent doesn’t know what level (11)
CL Item
Respondent doesn’t know if she went to school (12)
CL Item
Refused (13)
CL Item
Don’t know (14)
Item
What is the highest level of education the participant’s father finished?
integer
C3260565 (UMLS CUI [1])
GRDR023 Paternal Educational Attainment
Code List
What is the highest level of education the participant’s father finished?
CL Item
Eighth grade or less (1)
CL Item
More than eighth grade, but did not graduate from high school (2)
CL Item
Went to a business, trade, or vocational school instead of high school (3)
CL Item
High school graduate (4)
CL Item
Completed a GED (5)
CL Item
Went to a business, trade, or vocational school after high school (6)
CL Item
Went to college, but did not graduate (7)
CL Item
Graduated from a college or university (8)
CL Item
Professional training beyond a four-year college or university (9)
CL Item
He/she never went to school (10)
CL Item
He/she went to school, but respondent doesn’t know what level (11)
CL Item
Respondent doesn’t know if he/she went to school (12)
CL Item
Refused (13)
CL Item
Don’t know (14)
Item
What is the annual gross income for the household in which the participant lives (in U.S. dollars)?
integer
C3166654 (UMLS CUI [1])
GRDR024 Family Income
Code List
What is the annual gross income for the household in which the participant lives (in U.S. dollars)?
CL Item
Less than $10000 (USD) (1)
CL Item
$10000 - $14999 (2)
CL Item
$15000 - $19999 (3)
CL Item
$20000 - $24999 (4)
CL Item
$25000 - $29999 (5)
CL Item
$30000 - $34999 (6)
CL Item
$35000 - $39999 (7)
CL Item
$40000 - $44999 (8)
CL Item
$45000 - $49999 (9)
CL Item
$50000 - $54999 (10)
CL Item
$55000 - $59999 (11)
CL Item
$60000 - $74999 (12)
CL Item
$75000 - $84999 (13)
CL Item
$85000 - $99999 (14)
CL Item
$100000 - $149999 (15)
CL Item
$150000 - $199999 (16)
CL Item
$200000 - $249999 (17)
CL Item
$250000 and above (18)
CL Item
Unknown (19)
CL Item
Decline to provide (20)
GRDR025 Household Size
Item
How many people (including the participant) currently live in the participant’s house, apartment, or mobile home?
integer
C0682277 (UMLS CUI [1])
Item
If the participant lives in a group house, how many people live in the group house including participant?
integer
GRDR051 Number in Group House
Code List
If the participant lives in a group house, how many people live in the group house including participant?
CL Item
Participant does not live in a group house (1)
CL Item
2 (2)
CL Item
3 (3)
CL Item
4 (4)
CL Item
5 (5)
CL Item
6 (6)
CL Item
7 (7)
CL Item
8 (8)
CL Item
9 (9)
CL Item
10 (10)
CL Item
11 (11)
CL Item
12 (12)
CL Item
13 (13)
CL Item
14 (14)
CL Item
15 (15)
CL Item
16 (16)
CL Item
17 (17)
CL Item
18 (18)
CL Item
19 (19)
CL Item
20 (20)
CL Item
Other - enter number (21)
Item Group
Diagnosis
C0011900 (UMLS CUI-1)
GRDR026 Rare Disease Diagnosis
Item
What is the participant’s rare disease diagnosis?
text
C0678236 (UMLS CUI [1])
Item
What was the participant's age in years when the formal diagnosis was made?
integer
C1828181 (UMLS CUI [1])
GRDR027 Age at Diagnosis
Code List
What was the participant's age in years when the formal diagnosis was made?
CL Item
Prenatal (1)
CL Item
At birth (2)
CL Item
Less than 1 year (3)
CL Item
Age 1 - 89 years (4)
CL Item
90+ years (5)
CL Item
Age of diagnosis unknown (6)
Item
What was the participant's age in years when they first began experiencing symptoms of the rare disease?
integer
C0150907 (UMLS CUI [1])
GRDR028 Age of Symptom Onset
Code List
What was the participant's age in years when they first began experiencing symptoms of the rare disease?
CL Item
Prenatal (1)
CL Item
At birth (2)
CL Item
Less than 1 year (3)
CL Item
Age 1 - 89 years (4)
CL Item
90+ years (5)
CL Item
Participant never experienced any symptoms (6)
CL Item
Age of onset unknown (7)
Item
What test(s) did physicians or other health professionals do to make the rare disease diagnosis? (Select all that apply.)
text
C0678236 (UMLS CUI [1])
C0086143 (UMLS CUI [2])
GRDR029 Rare Disease Diagnostic Testing
Code List
What test(s) did physicians or other health professionals do to make the rare disease diagnosis? (Select all that apply.)
CL Item
NA (NA)
CL Item
None (None)
Item Group
Family History
C0241889 (UMLS CUI-1)
Item
Which family members also are known to have the participant’s rare disease?
integer
C0241889 (UMLS CUI [1])
C0678236 (UMLS CUI [2])
"GRDR030 Rare Disease Family History"
Code List
Which family members also are known to have the participant’s rare disease?
CL Item
None (1)
CL Item
Daughter (2)
CL Item
Granddaughter (3)
CL Item
Grandson (4)
CL Item
Half-brother (5)
CL Item
Half-sister (6)
CL Item
Maternal Aunt (7)
CL Item
Maternal Cousin (8)
CL Item
Maternal Grandfather (9)
CL Item
Maternal Grandmother (10)
CL Item
Maternal Uncle (11)
CL Item
Brother (12)
CL Item
Father (13)
CL Item
Mother (14)
CL Item
Sister (15)
CL Item
Nephew (16)
CL Item
Niece (17)
CL Item
Paternal Aunt (18)
CL Item
Paternal Cousin (19)
CL Item
Paternal Grandfather (20)
CL Item
Paternal Grandmother (21)
CL Item
Paternal Uncle (22)
CL Item
Son (23)
CL Item
Don't know (24)
Item
How much did the participant weigh when he/she was born?
integer
C0005612 (UMLS CUI [1])
GRDR031 Birth Weight
Code List
How much did the participant weigh when he/she was born?
Item
Units used for measurement of birth weight
text
C1519795 (UMLS CUI [1])
Units used for measurement of birth weight
Code List
Units used for measurement of birth weight
CL Item
g (1)
CL Item
kg (2)
CL Item
lb (3)
CL Item
oz (4)
CL Item
NA (5)
CL Item
Registry presents list of numbers and list of units (6)
CL Item
NA (7)
CL Item
""Don't know birth weight"" option listed in the unit list (8)
Item
Was the participant born at or close to his/her due date?
integer
C2825543 (UMLS CUI [1])
C0421451 (UMLS CUI [2])
"GRDR032 Participant Term Delivery"
Code List
Was the participant born at or close to his/her due date?
CL Item
Yes (1)
CL Item
No (2)
CL Item
Refused (3)
CL Item
Don’t know (4)
Item
How many weeks away from his/her due date was the participant born?
integer
C0151526 (UMLS CUI [1])
C3829314 (UMLS CUI [2])
GRDR033 Participant Premature Gestational Age at Birth
Code List
How many weeks away from his/her due date was the participant born?
CL Item
2 weeks late (1)
CL Item
1 week late (2)
CL Item
On time (3)
CL Item
1 week premature (4)
CL Item
2 weeks premature (5)
CL Item
3 weeks premature (6)
CL Item
4 weeks premature (7)
CL Item
5 weeks premature (8)
CL Item
6 weeks premature (9)
CL Item
7 weeks premature (10)
CL Item
8 weeks premature (11)
CL Item
9 weeks premature (12)
CL Item
10 weeks premature (13)
CL Item
11 weeks premature (14)
CL Item
12 weeks premature (15)
CL Item
13 weeks premature (16)
CL Item
14 weeks premature (17)
CL Item
15 weeks premature (18)
CL Item
16 weeks premature (19)
CL Item
17 weeks premature (20)
CL Item
18 weeks premature (21)
CL Item
19 weeks premature (22)
CL Item
20 weeks premature (23)
CL Item
Don't know (24)
GRDR052 Number of Pregnancies
Item
For adult female participants, what is the total number of pregnancies, including living children, deceased children, and abortions (spontaneous and therapeutic)?
integer
C3812254 (UMLS CUI [1])
GRDR053 Number of Live Births
Item
For adult female participants, what is the number of live births?
integer
C2114487 (UMLS CUI [1])
GRDR054 Number of Living Children
Item
What is the number of living children of the participant?
integer
C2114489 (UMLS CUI [1])
Item Group
Anthropometric
C0003188 (UMLS CUI-1)
GRDR034 Participant Weight
Item
What is the participant's most recent weight?
integer
C0005910 (UMLS CUI [1])
Item
Units used for weight measurement
text
C1519795 (UMLS CUI [1])
Units used for weight measurement
Code List
Units used for weight measurement
CL Item
g (g)
CL Item
kg (kg)
CL Item
lb (lb)
CL Item
oz (oz)
GRDR035 Participant Age for Weight
Item
How old was the participant when this weight was measured?
float
C0001779 (UMLS CUI [1])
C0005910 (UMLS CUI [2])
GRDR036 Participant Height
Item
What is the participant's most recent height?
integer
C0005890 (UMLS CUI [1])
Item
Units used for measurement of height
text
C1519795 (UMLS CUI [1])
Units used for measurement of height
Code List
Units used for measurement of height
CL Item
m (m)
CL Item
cm  (cm )
CL Item
ft (ft)
CL Item
in (in)
GRDR037 Participant Age for Height
Item
How old was the participant when this height was measured?
float
C0001779 (UMLS CUI [1])
C0005890 (UMLS CUI [2])
Item Group
Patient reported outcome
C2987124 (UMLS CUI-1)
Item
In general, would the participant say his/her health is…
integer
C0424575 (UMLS CUI [1])
GRDR055 General Health
Code List
In general, would the participant say his/her health is…
CL Item
Excellent (1)
CL Item
Very good (2)
CL Item
Good (3)
CL Item
Fair (4)
CL Item
Poor (5)
Item
Does the participant's health now limit him/her in doing vigorous activities?
integer
C0516981 (UMLS CUI [1])
GRDR056 Physical Functioning
Code List
Does the participant's health now limit him/her in doing vigorous activities?
CL Item
Not at all (1)
CL Item
Very little (2)
CL Item
Somewhat (3)
CL Item
Quite a lot (4)
CL Item
Cannot do (5)
Item
How much did pain interfere with the participant's enjoyment of life?
integer
C0030193 (UMLS CUI [1])
GRDR057 Pain
Code List
How much did pain interfere with the participant's enjoyment of life?
CL Item
Not at all (1)
CL Item
A little bit  (2)
CL Item
Somewhat  (3)
CL Item
Quite a bit  (4)
CL Item
Very much (5)
Item
How often does the participant feel tired?
text
C0015672 (UMLS CUI [1])
"GRDR058 Fatigue"
Code List
How often does the participant feel tired?
CL Item
Never (Never)
CL Item
Rarely (Rarely)
CL Item
Sometimes (Sometimes)
CL Item
Often (Often)
CL Item
Always (Always)
Item
The participant feels depressed…
integer
C0344315 (UMLS CUI [1])
"GRDR059 Depression"
Code List
The participant feels depressed…
CL Item
Never (1)
CL Item
Rarely (2)
CL Item
Sometimes (3)
CL Item
Often (4)
CL Item
Always (5)
Item Group
Devices and Health services
C0018747 (UMLS CUI-1)
GRDR038 Current Medications
Item
What are the medications that this participant is currently taking?
text
C0746467 (UMLS CUI [1])
GRDR039 Medical Foods/Special Diet
Item
Does the participant take any medical foods or follow a special diet for treatment of his/her rare disease?
text
C1519433 (UMLS CUI [1])
GRDR040 Previous Surgeries
Item
Has the participant had any of the following surgeries to treat his/her rare disease?
text
C0543467 (UMLS CUI [1])
Item
Has the participant ever been admitted to the hospital due to this rare disease or condition?
integer
C0019993 (UMLS CUI [1])
GRDR060 Participant Hospitalization
Code List
Has the participant ever been admitted to the hospital due to this rare disease or condition?
CL Item
Yes (1)
CL Item
No (2)
CL Item
Refused (3)
CL Item
Don’t know (4)
GRDR041 Participant Hospitalization Count
Item
In the past 12 months, how many times has the participant been admitted to a hospital due to their condition?
integer
GRDR042 Participant Assistive Device
Item
Does the participant use any type of medical or assistive device to help them move around, communicate, or do things?
text
C0872018 (UMLS CUI [1])
Item Group
Clinical Research Participation and Biospecimen
C0008972 (UMLS CUI-1)
C0679823 (UMLS CUI-3)
Item
Has the participant previously participated in any clinical trials related to their rare disease?
integer
C2348568 (UMLS CUI [1])
GRDR043 Participant Previous Trial Participation
Code List
Has the participant previously participated in any clinical trials related to their rare disease?
CL Item
Yes (1)
CL Item
No (2)
CL Item
Refused (3)
CL Item
Don’t know (4)
Item
Does the participant currently participate in any clinical trials related to their rare disease?
integer
C2348568 (UMLS CUI [1])
GRDR044 Participant Current Trial Participation
Code List
Does the participant currently participate in any clinical trials related to their rare disease?
CL Item
Yes (1)
CL Item
No (2)
CL Item
Refused (3)
CL Item
Don’t know (4)
Item
Is the participant willing to be contacted in the future about research related to their rare disease?
integer
C2348568 (UMLS CUI [1])
GRDR045 Participant Future Trial Participation
Code List
Is the participant willing to be contacted in the future about research related to their rare disease?
CL Item
Yes (1)
CL Item
No (2)
CL Item
Refused (3)
CL Item
Don’t know (4)
Item
Is the participant willing to be contacted about donating a sample of blood, tissue, or other biospecimen for research in the future?
integer
C2347026 (UMLS CUI [1])
C0080231 (UMLS CUI [2])
GRDR046 Participant Future Biospecimen Donation
Code List
Is the participant willing to be contacted about donating a sample of blood, tissue, or other biospecimen for research in the future?
CL Item
Yes (1)
CL Item
No (2)
CL Item
Refused (3)
CL Item
Don’t know (4)
Item
Has the participant donated a sample of blood, tissue, or other biospecimen for research in the past?
integer
C2347026 (UMLS CUI [1])
GRDR047 Participant Existing Biospecimen
Code List
Has the participant donated a sample of blood, tissue, or other biospecimen for research in the past?
CL Item
Yes (1)
CL Item
No (2)
CL Item
Refused (3)
CL Item
Don’t know (4)
Item
If a biospecimen was donated in the past, what type was it?
integer
C2347029 (UMLS CUI [1])
GRDR048 Participant Existing Biospecimen Type
Code List
If a biospecimen was donated in the past, what type was it?
CL Item
Blood (1)
CL Item
Saliva/Cheek Swab (2)
CL Item
Urine (3)
CL Item
Other bodily fluid (4)
CL Item
Tissue (5)
CL Item
N/A - No biospecimen donation (6)
GRDR060 Location of biospecimen donation
Item
What is the name of the hospital/clinic where the biospecimen was donated?
text
C2347026 (UMLS CUI [1])
C0019994 (UMLS CUI [2])
Item Group
Contact and Communication Preferences
C1997600 (UMLS CUI-1)
Item
How does the participant prefer to communicate?
integer
C1997600 (UMLS CUI [1])
Participant Preferred Method of Communication
Code List
How does the participant prefer to communicate?
CL Item
Sign language (1)
CL Item
Spoken language (2)
CL Item
Written language (3)
Item
How does the participant prefer to be contacted?
integer
C1880174 (UMLS CUI [1])
Participant Preferred Contact
Code List
How does the participant prefer to be contacted?
CL Item
E-mail (1)
CL Item
Mail (2)
CL Item
Phone (3)
Item Group
Administrative
C1320722 (UMLS CUI-1)
GRDR002 Participant Identifier Source
Item
GRDR002 Participant Identifier Source
text
C2985615 (UMLS CUI [1])
GRDR003 Source Registry
Item
GRDR003 Source Registry
text
C0804617 (UMLS CUI [1])
GRDR004 Registry Record Date
Item
GRDR004 Registry Record Date
date
C0011008 (UMLS CUI [1])
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