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NIMH Data Archive
NDA ABCD CCF OAI NIAAADA AMP SCZ HEAL
Change History For

FXS Demographics

941 Shared Subjects

Demographic information as defined by Dr. Hessl's group from the Fragile X Project, MIND Institute, University of California, Davis
Clinical Assessments
Demographics
12/18/2012
fxs_demographics04
06/23/2017
View Data Structure
04
Definition
Submission Template
Element Name Change Description Before Now When
interview_age VALUE_RANGE, VALUE_RANGE: 0 :: 1260 VALUE_RANGE: 0::1440 04/04/2024 13:54 PM
ethnicity VALUE_RANGE, VALUE_RANGE: Hispanic or Latino; Not Hispanic or Latino; Unknown; Prefer not to answer VALUE_RANGE: Hispanic or Latino; Not Hispanic or Latino; Unknown 04/06/2023 12:02 PM
race VALUE_RANGE, VALUE_RANGE: American Indian/Alaska Native; Asian; Hawaiian or Pacific Islander; Black or African American; White; More than one race; Unknown or not reported; Other Non-White; Other; Prefer not to answer VALUE_RANGE: American Indian/Alaska Native; Asian; Hawaiian or Pacific Islander; Black or African American; White; More than one race; Unknown or not reported; Other Non-White; Other 04/06/2023 12:02 PM
ethnicity VALUE_RANGE, VALUE_RANGE: Hispanic or Latino; Not Hispanic or Latino; Unknown VALUE_RANGE: Hispanic or Latino; Not Hispanic or Latino; Unknown; Prefer not to answer 04/06/2023 11:39 AM
race VALUE_RANGE, VALUE_RANGE: American Indian/Alaska Native; Asian; Hawaiian or Pacific Islander; Black or African American; White; More than one race; Unknown or not reported; Other Non-White; Other VALUE_RANGE: American Indian/Alaska Native; Asian; Hawaiian or Pacific Islander; Black or African American; White; More than one race; Unknown or not reported; Other Non-White; Other; Prefer not to answer 04/06/2023 11:39 AM
race VALUE_RANGE, VALUE_RANGE: American Indian/Alaska Native; Asian; Hawaiian or Pacific Islander; Black or African American; White; More than one race; Unknown or not reported; Other Non-White VALUE_RANGE: American Indian/Alaska Native; Asian; Hawaiian or Pacific Islander; Black or African American; White; More than one race; Unknown or not reported; Other Non-White; Other 07/15/2022 10:00 AM
behavobs_handedness NOTES, NOTES: R = Right-handed; L = Left-handed; A = Ambidextrous; NYE =not yet established; 999 = missing/refused NOTES: 1 = Right-handed; 2 = Left-handed; 3 = Ambidextrous; NYE =not yet established; 999 = missing/refused 06/23/2022 13:04 PM
behavobs_handedness VALUE_RANGE, VALUE_RANGE: R;L; A;NYE; 999 VALUE_RANGE: 1;2;3;NYE;999 06/23/2022 13:04 PM
family_user_def_id ELEMENT_SIZE, ELEMENT_SIZE: 20 ELEMENT_SIZE: 25 04/14/2022 12:46 PM
race VALUE_RANGE, VALUE_RANGE: American Indian/Alaska Native; Asian; Hawaiian or Pacific Islander; Black or African American; White; More than one race; Unknown or not reported VALUE_RANGE: American Indian/Alaska Native; Asian; Hawaiian or Pacific Islander; Black or African American; White; More than one race; Unknown or not reported; Other Non-White 07/29/2021 12:53 PM
sex DESCRIPTION DESCRIPTION: Sex of the subject DESCRIPTION: Sex of subject at birth 07/09/2021 10:38 AM
marital_status NOTES, NOTES: 1 = Married; 2 = Divorced; 3 = Single or never married; 4 = Widow or widower; 5=Remarried; 9 = Unknown NOTES: 1 = Married; 2 = Divorced; 3 = Single or never married; 4 = Widow or widower; 5=Remarried; 6=Separated 9 = Unknown 05/27/2021 12:13 PM
marital_status VALUE_RANGE, VALUE_RANGE: 1::5;9 VALUE_RANGE: 1::6; 9 05/27/2021 12:13 PM
interview_date NOTES, NOTES: Required field NOTES: 01/08/2021 10:21 AM
sex VALUE_RANGE, , NOTES, VALUE_RANGE: M;F NOTES: M = Male; F = Female VALUE_RANGE: M;F; O; NR NOTES: M = Male; F = Female; O=Other; NR = Not reported 02/21/2020 13:02 PM
gender PERMANENTLY ALIASED gender sex 04/22/2019 00:00 AM
gender DESCRIPTION DESCRIPTION: Sex of the subject DESCRIPTION: Sex of the subject 08/22/2018 10:43 AM
gender DESCRIPTION DESCRIPTION: Block Brief 2000: Sex of the subject DESCRIPTION: Sex of the subject 08/20/2018 10:21 AM
gender DESCRIPTION DESCRIPTION: Sex of the subject DESCRIPTION: Block Brief 2000: Sex of the subject 08/14/2018 16:18 PM
race DESCRIPTION DESCRIPTION: Race of participant DESCRIPTION: Race of study subject 12/21/2017 08:54 AM
race DESCRIPTION DESCRIPTION: Race of study subject DESCRIPTION: Race of participant 12/21/2017 08:52 AM
interview_date DESCRIPTION DESCRIPTION: Date on which the interview/genetic test/sampling/imaging was completed. MM/DD/YYYY DESCRIPTION: Date on which the interview/genetic test/sampling/imaging/biospecimen was completed. MM/DD/YYYY 08/28/2017 15:10 PM
behavobs_handedness NEW_MAP_ELEMENT Added data element 'behavobs_handedness' to data structure 'fxs_demographics04'. 06/23/2017 13:51 PM
path_chans NEW_DATA_ELEMENT 06/23/2017 13:51 PM
path_chans NEW_MAP_ELEMENT Added data element 'path_chans' to data structure 'fxs_demographics04'. 06/23/2017 13:51 PM
resection NEW_DATA_ELEMENT 06/23/2017 13:51 PM
resection NEW_MAP_ELEMENT Added data element 'resection' to data structure 'fxs_demographics04'. 06/23/2017 13:51 PM
behavobs_handedness VALUE_RANGE, NOTES VALUE_RANGE: R;L; A;999 NOTES: R = Right-handed; L = Left-handed; A = Ambidextrous VALUE_RANGE: R;L; A;NYE; 999 NOTES: R = Right-handed; L = Left-handed; A = Ambidextrous; NYE =not yet established; 999 = missing/refused 03/31/2017 15:06 PM
race DESCRIPTION DESCRIPTION: Race of participant DESCRIPTION: Race of study subject 07/12/2016 16:49 PM
gender VALUE_RANGE, NOTES VALUE_RANGE: M;F; T NOTES: M = Male; F = Female; T= Transgender VALUE_RANGE: M;F NOTES: M = Male; F = Female 05/25/2016 11:51 AM
gender DESCRIPTION DESCRIPTION: Gender DESCRIPTION: Sex of the subject 05/25/2016 11:50 AM
marital_status VALUE_RANGE, NOTES VALUE_RANGE: 1::4;9 NOTES: 1 = Married; 2 = Divorced; 3 = Single or never married; 4 = Widow or widower; 9 = Unknown VALUE_RANGE: 1::5;9 NOTES: 1 = Married; 2 = Divorced; 3 = Single or never married; 4 = Widow or widower; 5=Remarried; 9 = Unknown 01/08/2016 13:54 PM
iqtestname ELEMENT_SIZE ELEMENT_SIZE: 30 ELEMENT_SIZE: 255 12/17/2015 12:23 PM
interview_date DESCRIPTION DESCRIPTION: Date on which the interview/genetic test/sampling/imaging was completed. MM/DD/YYY DESCRIPTION: Date on which the interview/genetic test/sampling/imaging was completed. MM/DD/YYYY 06/02/2015 17:40 PM
interview_date DESCRIPTION DESCRIPTION: Date on which the interview/genetic test/sampling/imaging was completed DESCRIPTION: Date on which the interview/genetic test/sampling/imaging was completed. MM/DD/YYY 06/02/2015 17:40 PM
interview_age VALUE_RANGE VALUE_RANGE: 0 :: 1200 VALUE_RANGE: 0 :: 1260 06/01/2015 14:16 PM
fmr1_status NOTES NOTES: Fragile X Full Mutation=Individual has >200 CGG repeats in FMR1 gene. Status confirmed by blood test. This causes the FMR1 gene to shut down production of FMRP. The lack of FMRP causes fragile x syndrome; Fragile X Mosaicism; Fragile X Premutation Carrier= Individual has 55-200 CGG repeats in FMR1 gene. Status confirmed by blood test. He/She carries an unstable mutation of the gene that can expand in future generations; Unknown= Individual at risk for FMR1 mutation; Mutation status unknown; Normal Range=Individual has < 45 CGG repeats in FMR1 gene, which falls into the normal range. Status confirmed by blood test. Individual is related to someone with CGG repeat length >55 in FMR1 gene. NOTES: Fragile X Full Mutation=Individual has >200 CGG repeats in FMR1 gene. Status confirmed by blood test. This causes the FMR1 gene to shut down production of FMRP. The lack of FMRP causes fragile x syndrome; Fragile X Mosaicism; Fragile X Premutation Carrier= Individual has 55-200 CGG repeats in FMR1 gene. Status confirmed by blood test. He/She carries an unstable mutation of the gene that can expand in future generations; Unknown= Individual at risk for FMR1 mutation; Mutation status unknown; Normal Range=Individual has < 45 CGG repeats in FMR1 gene, which falls into the normal range. Status confirmed by blood test. Individual is related to someone with CGG repeat length >55 in FMR1 gene. 05/29/2015 13:33 PM
fxs_site_name_other REQUIRED REQUIRED: Optional REQUIRED: Recommended 04/06/2015 14:17 PM
behavobs_handedness VALUE_RANGE VALUE_RANGE: R;L; A VALUE_RANGE: R;L; A;999 03/09/2015 07:27 AM
diag_group NOTES NOTES: FX=Individual has >200 CGG repeats in FMR1 gene. Status confirmed by blood test. This causes the FMR1 gene to shut down production of FMRP. The lack of FMRP causes fragile x syndrome. CX=Individual has 55-200 CGG repeats in FMR1 gene. Status confirmed by blood test. He/She carries an unstable mutation of the gene that can expand in future generations. UX=Individual at risk for FMR1 mutation; Mutation status unknown. TX=Individual has < 45 CGG repeats in FMR1 gene, which falls into the normal range. Status confirmed by blood test. Individual is related to someone with CGG repeat length >55 in FMR1 gene NOTES: FX=Individual has >200 CGG repeats in FMR1 gene. Status confirmed by blood test. This causes the FMR1 gene to shut down production of FMRP. The lack of FMRP causes fragile x syndrome.CX=Individual has 55-200 CGG repeats in FMR1 gene. Status confirmed by blood test. He/She carries an unstable mutation of the gene that can expand in future generations.UX=Individual at risk for FMR1 mutation; Mutation status unknown.TX=Individual has < 45 CGG repeats in FMR1 gene, which falls into the normal range. Status confirmed by blood test. Individual is related to someone with CGG repeat length >55 in FMR1 gene 01/13/2015 17:44 PM
family_diag_group DESCRIPTION DESCRIPTION: Enrollment diagnostic group of family DESCRIPTION: Enrollment diagnostic group of family 01/13/2015 17:38 PM
fxs_site_id DESCRIPTION DESCRIPTION: Fragile X project site 1=UC Davis, 2=Stanford, 3=Rush, 4=Duke, 5=UNC, 6=Colorado, 7=Johns Hopkins, 8=Wisconsin, 9=Indiana, 10=Other DESCRIPTION: Fragile X project site1=UC Davis, 2=Stanford, 3=Rush, 4=Duke, 5=UNC, 6=Colorado, 7=Johns Hopkins, 8=Wisconsin, 9=Indiana, 10=Other 01/13/2015 17:38 PM
src_subject_id DESCRIPTION DESCRIPTION: The site or study's subject identification DESCRIPTION: Subject ID how it's defined in lab/project 01/12/2015 18:22 PM
gender VALUE_RANGE, NOTES VALUE_RANGE: M;F NOTES: M = Male; F = Female VALUE_RANGE: M;F; T NOTES: M = Male; F = Female; T= Transgender 12/01/2014 12:34 PM
diag_group NEW_MAP_ELEMENT Added data element 'diag_group' to data structure 'fxs_demographics04'. 10/20/2014 18:08 PM
education_level NEW_MAP_ELEMENT Added data element 'education_level' to data structure 'fxs_demographics04'. 10/20/2014 18:08 PM
ethnicity NEW_MAP_ELEMENT Added data element 'ethnicity' to data structure 'fxs_demographics04'. 10/20/2014 18:08 PM
ethnicity POSITION POSITION: 11 POSITION: 12 10/20/2014 18:08 PM
ethnicity POSITION POSITION: 10 POSITION: 11 10/20/2014 18:08 PM
ethnicity POSITION POSITION: 7 POSITION: 10 10/20/2014 18:08 PM
family_diag_group NEW_MAP_ELEMENT Added data element 'family_diag_group' to data structure 'fxs_demographics04'. 10/20/2014 18:08 PM
family_user_def_id NEW_MAP_ELEMENT Added data element 'family_user_def_id' to data structure 'fxs_demographics04'. 10/20/2014 18:08 PM
family_user_def_id POSITION POSITION: 16 POSITION: 8 10/20/2014 18:08 PM
fmr1_status NEW_MAP_ELEMENT Added data element 'fmr1_status' to data structure 'fxs_demographics04'. 10/20/2014 18:08 PM
fmr1_status POSITION POSITION: 4 POSITION: 6 10/20/2014 18:08 PM
fxs_site_id NEW_MAP_ELEMENT Added data element 'fxs_site_id' to data structure 'fxs_demographics04'. 10/20/2014 18:08 PM
fxs_site_id REQUIRED REQUIRED: Required REQUIRED: Recommended 10/20/2014 18:08 PM
fxs_site_id POSITION POSITION: 14 POSITION: 19 10/20/2014 18:08 PM
fxs_site_id POSITION POSITION: 13 POSITION: 14 10/20/2014 18:08 PM
fxs_site_id POSITION POSITION: 10 POSITION: 13 10/20/2014 18:08 PM
fxs_site_name_other NEW_MAP_ELEMENT Added data element 'fxs_site_name_other' to data structure 'fxs_demographics04'. 10/20/2014 18:08 PM
fxs_site_name_other POSITION POSITION: 14 POSITION: 15 10/20/2014 18:08 PM
fxs_site_name_other POSITION POSITION: 15 POSITION: 20 10/20/2014 18:08 PM
fxs_site_name_other POSITION POSITION: 11 POSITION: 14 10/20/2014 18:08 PM
gender NEW_MAP_ELEMENT Added data element 'gender' to data structure 'fxs_demographics04'. 10/20/2014 18:08 PM
gender POSITION POSITION: 3 POSITION: 5 10/20/2014 18:08 PM
hh_income NEW_MAP_ELEMENT Added data element 'hh_income' to data structure 'fxs_demographics04'. 10/20/2014 18:08 PM
hh_income POSITION POSITION: 16 POSITION: 13 10/20/2014 18:08 PM
hh_income POSITION POSITION: 15 POSITION: 16 10/20/2014 18:08 PM
interview_age NEW_MAP_ELEMENT Added data element 'interview_age' to data structure 'fxs_demographics04'. 10/20/2014 18:08 PM
interview_age POSITION POSITION: 12 POSITION: 3 10/20/2014 18:08 PM
interview_date REQUIRED, SUMMARY_DETAIL REQUIRED: Recommended SUMMARY_DETAIL: REQUIRED: Required SUMMARY_DETAIL: 0 10/20/2014 18:08 PM
interview_date NEW_MAP_ELEMENT Added data element 'interview_date' to data structure 'fxs_demographics04'. 10/20/2014 18:08 PM
iq NEW_MAP_ELEMENT Added data element 'iq' to data structure 'fxs_demographics04'. 10/20/2014 18:08 PM
iq POSITION POSITION: 12 POSITION: 16 10/20/2014 18:08 PM
iq POSITION POSITION: 11 POSITION: 12 10/20/2014 18:08 PM
iq POSITION POSITION: 8 POSITION: 11 10/20/2014 18:08 PM
iq_date NEW_MAP_ELEMENT Added data element 'iq_date' to data structure 'fxs_demographics04'. 10/20/2014 18:08 PM
iq_date POSITION POSITION: 13 POSITION: 17 10/20/2014 18:08 PM
iq_date POSITION POSITION: 12 POSITION: 13 10/20/2014 18:08 PM
iq_date POSITION POSITION: 9 POSITION: 12 10/20/2014 18:08 PM
iqtestname NEW_MAP_ELEMENT Added data element 'iqtestname' to data structure 'fxs_demographics04'. 10/20/2014 18:08 PM
iqtestname POSITION POSITION: 8 POSITION: 9 10/20/2014 18:08 PM
iqtestname POSITION POSITION: 5 POSITION: 8 10/20/2014 18:08 PM
iqtestname POSITION POSITION: 9 POSITION: 18 10/20/2014 18:08 PM
marital_status NEW_MAP_ELEMENT Added data element 'marital_status' to data structure 'fxs_demographics04'. 10/20/2014 18:08 PM
phenotype NEW_MAP_ELEMENT Added data element 'phenotype' to data structure 'fxs_demographics04'. 10/20/2014 18:08 PM
phenotype SUMMARY_DETAIL SUMMARY_DETAIL: SUMMARY_DETAIL: 0 10/20/2014 18:08 PM
race NEW_MAP_ELEMENT Added data element 'race' to data structure 'fxs_demographics04'. 10/20/2014 18:08 PM
race POSITION POSITION: 10 POSITION: 11 10/20/2014 18:08 PM
race POSITION POSITION: 9 POSITION: 10 10/20/2014 18:08 PM
race POSITION POSITION: 6 POSITION: 9 10/20/2014 18:08 PM
src_subject_id NEW_MAP_ELEMENT Added data element 'src_subject_id' to data structure 'fxs_demographics04'. 10/20/2014 18:08 PM
subjectkey NEW_MAP_ELEMENT Added data element 'subjectkey' to data structure 'fxs_demographics04'. 10/20/2014 18:08 PM
diag_group NEW_MAP_ELEMENT Added data element 'diag_group' to data structure 'fxs_demographics04'. 10/20/2014 17:43 PM
education_level NEW_MAP_ELEMENT Added data element 'education_level' to data structure 'fxs_demographics04'. 10/20/2014 17:43 PM
ethnicity POSITION POSITION: 11 POSITION: 12 10/20/2014 17:43 PM
ethnicity POSITION POSITION: 10 POSITION: 11 10/20/2014 17:43 PM
ethnicity POSITION POSITION: 7 POSITION: 10 10/20/2014 17:43 PM
ethnicity NEW_MAP_ELEMENT Added data element 'ethnicity' to data structure 'fxs_demographics04'. 10/20/2014 17:43 PM
family_diag_group NEW_MAP_ELEMENT Added data element 'family_diag_group' to data structure 'fxs_demographics04'. 10/20/2014 17:43 PM
family_user_def_id NEW_MAP_ELEMENT Added data element 'family_user_def_id' to data structure 'fxs_demographics04'. 10/20/2014 17:43 PM
family_user_def_id POSITION POSITION: 16 POSITION: 8 10/20/2014 17:43 PM
fmr1_status NEW_MAP_ELEMENT Added data element 'fmr1_status' to data structure 'fxs_demographics04'. 10/20/2014 17:43 PM
fmr1_status POSITION POSITION: 4 POSITION: 6 10/20/2014 17:43 PM
fxs_site_id POSITION POSITION: 13 POSITION: 14 10/20/2014 17:43 PM
fxs_site_id POSITION POSITION: 10 POSITION: 13 10/20/2014 17:43 PM
fxs_site_id NEW_MAP_ELEMENT Added data element 'fxs_site_id' to data structure 'fxs_demographics04'. 10/20/2014 17:43 PM
fxs_site_id REQUIRED REQUIRED: Required REQUIRED: Recommended 10/20/2014 17:43 PM
fxs_site_id POSITION POSITION: 14 POSITION: 19 10/20/2014 17:43 PM
fxs_site_name_other POSITION POSITION: 14 POSITION: 15 10/20/2014 17:43 PM
fxs_site_name_other POSITION POSITION: 15 POSITION: 20 10/20/2014 17:43 PM
fxs_site_name_other POSITION POSITION: 11 POSITION: 14 10/20/2014 17:43 PM
fxs_site_name_other NEW_MAP_ELEMENT Added data element 'fxs_site_name_other' to data structure 'fxs_demographics04'. 10/20/2014 17:43 PM
gender POSITION POSITION: 3 POSITION: 5 10/20/2014 17:43 PM
gender NEW_MAP_ELEMENT Added data element 'gender' to data structure 'fxs_demographics04'. 10/20/2014 17:43 PM
hh_income NEW_MAP_ELEMENT Added data element 'hh_income' to data structure 'fxs_demographics04'. 10/20/2014 17:43 PM
hh_income POSITION POSITION: 16 POSITION: 13 10/20/2014 17:43 PM
hh_income POSITION POSITION: 15 POSITION: 16 10/20/2014 17:43 PM
interview_age NEW_MAP_ELEMENT Added data element 'interview_age' to data structure 'fxs_demographics04'. 10/20/2014 17:43 PM
interview_age POSITION POSITION: 12 POSITION: 3 10/20/2014 17:43 PM
interview_date REQUIRED, SUMMARY_DETAIL REQUIRED: Recommended SUMMARY_DETAIL: REQUIRED: Required SUMMARY_DETAIL: 0 10/20/2014 17:43 PM
interview_date NEW_MAP_ELEMENT Added data element 'interview_date' to data structure 'fxs_demographics04'. 10/20/2014 17:43 PM
iq POSITION POSITION: 12 POSITION: 16 10/20/2014 17:43 PM
iq POSITION POSITION: 11 POSITION: 12 10/20/2014 17:43 PM
iq POSITION POSITION: 8 POSITION: 11 10/20/2014 17:43 PM
iq NEW_MAP_ELEMENT Added data element 'iq' to data structure 'fxs_demographics04'. 10/20/2014 17:43 PM
iq_date POSITION POSITION: 13 POSITION: 17 10/20/2014 17:43 PM
iq_date POSITION POSITION: 12 POSITION: 13 10/20/2014 17:43 PM
iq_date POSITION POSITION: 9 POSITION: 12 10/20/2014 17:43 PM
iq_date NEW_MAP_ELEMENT Added data element 'iq_date' to data structure 'fxs_demographics04'. 10/20/2014 17:43 PM
iqtestname NEW_MAP_ELEMENT Added data element 'iqtestname' to data structure 'fxs_demographics04'. 10/20/2014 17:43 PM
iqtestname POSITION POSITION: 9 POSITION: 18 10/20/2014 17:43 PM
iqtestname POSITION POSITION: 8 POSITION: 9 10/20/2014 17:43 PM
iqtestname POSITION POSITION: 5 POSITION: 8 10/20/2014 17:43 PM
marital_status NEW_MAP_ELEMENT Added data element 'marital_status' to data structure 'fxs_demographics04'. 10/20/2014 17:43 PM
phenotype SUMMARY_DETAIL SUMMARY_DETAIL: SUMMARY_DETAIL: 0 10/20/2014 17:43 PM
phenotype NEW_MAP_ELEMENT Added data element 'phenotype' to data structure 'fxs_demographics04'. 10/20/2014 17:43 PM
race POSITION POSITION: 10 POSITION: 11 10/20/2014 17:43 PM
race POSITION POSITION: 9 POSITION: 10 10/20/2014 17:43 PM
race POSITION POSITION: 6 POSITION: 9 10/20/2014 17:43 PM
race NEW_MAP_ELEMENT Added data element 'race' to data structure 'fxs_demographics04'. 10/20/2014 17:43 PM
src_subject_id NEW_MAP_ELEMENT Added data element 'src_subject_id' to data structure 'fxs_demographics04'. 10/20/2014 17:43 PM
subjectkey NEW_MAP_ELEMENT Added data element 'subjectkey' to data structure 'fxs_demographics04'. 10/20/2014 17:43 PM
Data Structure Change History

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