Assessment of Neurological Deterioration in Subjects with LINCL

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Demographics (13)

AGE - Subject age in months (phv00420603.v1.p1)
AGE - Subject age in months (phv00389358.v1.p1)
AgeAtRegistration - Age at registration (phv00420679.v1.p1)
Eligibility_age - If Yes Date That Eligibility Was Determined Age In Days (phv00420711.v1.p1)
Gender - Gender (phv00420680.v1.p1)
ParticipantWithdrew_age - Investigator Determined Participant Withdrew Age In Days (phv00420676.v1.p1)
registration_age - Age (in days) at registration (phv00420717.v1.p1)
SEX - Subject sex (phv00389359.v1.p1)
SignedInformedConsentAssent_age - If Yes Date Consentassent Signed Age In Days (phv00420712.v1.p1)
start_age - Age (in days) at study start (phv00420716.v1.p1)
visit_age - Computed Age (in days) at visit (where DOB provided) (phv00420698.v1.p1)
visit_age - Computed Age (in days) at visit (where DOB provided) (phv00420710.v1.p1)
visit_age - Computed Age (in days) at visit (where DOB provided) (phv00420675.v1.p1)

Imaging (73)

%CSF - Whole Brain Percent CSF (phv00389363.v1.p1)
ADC - Whole Brain Apparent Diffusion Coefficient (phv00389361.v1.p1)
lh_bankssts_thickness - Left Hemisphere Cortical Thickness: Bankssts (phv00420605.v1.p1)
lh_caudalanteriorcingulate_thickness - Left Hemisphere Cortical Thickness: Caudal anterior cingulate (phv00420606.v1.p1)
lh_caudalmiddlefrontal_thickness - Left Hemisphere Cortical Thickness: Caudal middle frontal (phv00420607.v1.p1)
lh_cuneus_thickness - Left Hemisphere Cortical Thickness: Cuneus (phv00420608.v1.p1)
lh_entorhinal_thickness - Left Hemisphere Cortical Thickness: Entorhinal (phv00420609.v1.p1)
lh_frontalpole_thickness - Left Hemisphere Cortical Thickness: Frontal pole (phv00420610.v1.p1)
lh_fusiform_thickness - Left Hemisphere Cortical Thickness: Fusiform (phv00420611.v1.p1)
lh_inferiorparietal_thickness - Left Hemisphere Cortical Thickness: Inferior parietal (phv00420612.v1.p1)
lh_inferiortemporal_thickness - Left Hemisphere Cortical Thickness: Inferior temporal (phv00420613.v1.p1)
lh_insula_thickness - Left Hemisphere Cortical Thickness: Insula (phv00420614.v1.p1)
lh_isthmuscingulate_thickness - Left Hemisphere Cortical Thickness: Isthmus cingulate (phv00420615.v1.p1)
lh_lateraloccipital_thickness - Left Hemisphere Cortical Thickness: Lateral occipital (phv00420616.v1.p1)
lh_lateralorbitofrontal_thickness - Left Hemisphere Cortical Thickness: Lateral orbitofrontal (phv00420617.v1.p1)
lh_lingual_thickness - Left Hemisphere Cortical Thickness: Lingual (phv00420618.v1.p1)
lh_medialorbitofrontal_thickness - Left Hemisphere Cortical Thickness: Medial orbitofrontal (phv00420619.v1.p1)
lh_middletemporal_thickness - Left Hemisphere Cortical Thickness: Middle temporal (phv00420620.v1.p1)
lh_paracentral_thickness - Left Hemisphere Cortical Thickness: Paracentral (phv00420621.v1.p1)
lh_parahippocampal_thickness - Left Hemisphere Cortical Thickness: Parahippocampal (phv00420622.v1.p1)
lh_parsopercularis_thickness - Left Hemisphere Cortical Thickness: Pars opercularis (phv00420623.v1.p1)
lh_parsorbitalis_thickness - Left Hemisphere Cortical Thickness: Pars orbitalis (phv00420624.v1.p1)
lh_parstriangularis_thickness - Left Hemisphere Cortical Thickness: Pars triangularis (phv00420625.v1.p1)
lh_pericalcarine_thickness - Left Hemisphere Cortical Thickness: Pericalcarine (phv00420626.v1.p1)
lh_postcentral_thickness - Left Hemisphere Cortical Thickness: Postcentral (phv00420627.v1.p1)
lh_posteriorcingulate_thickness - Left Hemisphere Cortical Thickness: Posterior cingulate (phv00420628.v1.p1)
lh_precentral_thickness - Left Hemisphere Cortical Thickness: Precentral (phv00420629.v1.p1)
lh_precuneus_thickness - Left Hemisphere Cortical Thickness: Precuneus (phv00420630.v1.p1)
lh_rostralanteriorcingulate_thickness - Left Hemisphere Cortical Thickness: Rostral anterior cingulate (phv00420631.v1.p1)
lh_rostralmiddlefrontal_thickness - Left Hemisphere Cortical Thickness: Rostral middle frontal (phv00420632.v1.p1)
lh_superiorfrontal_thickness - Left Hemisphere Cortical Thickness: Superior frontal (phv00420633.v1.p1)
lh_superiorparietal_thickness - Left Hemisphere Cortical Thickness: Superior parietal (phv00420634.v1.p1)
lh_superiortemporal_thickness - Left Hemisphere Cortical Thickness: Superior temporal (phv00420635.v1.p1)
lh_supramarginal_thickness - Left Hemisphere Cortical Thickness: Supramarginal (phv00420636.v1.p1)
lh_temporalpole_thickness - Left Hemisphere Cortical Thickness: Temporal pole (phv00420637.v1.p1)
lh_transversetemporal_thickness - Left Hemisphere Cortical Thickness: Transverse temporal (phv00420638.v1.p1)
lh.total - Left Hemisphere Cortical Thickness: Total (phv00420604.v1.p1)
NAA/Cr - Whole Brain NAA/CREATINE Ratio (phv00389362.v1.p1)
rh_bankssts_thickness - Right Hemishpere Cortical Thickness: Bankssts (phv00420640.v1.p1)
rh_caudalanteriorcingulate_thickness - Right Hemishpere Cortical Thickness: Caudal anterior cingulate (phv00420641.v1.p1)
rh_caudalmiddlefrontal_thickness - Right Hemishpere Cortical Thickness: Caudal middle frontal (phv00420642.v1.p1)
rh_cuneus_thickness - Right Hemishpere Cortical Thickness: Cuneus (phv00420643.v1.p1)
rh_entorhinal_thickness - Right Hemishpere Cortical Thickness: Entorhinal (phv00420644.v1.p1)
rh_frontalpole_thickness - Right Hemishpere Cortical Thickness: Frontal pole (phv00420645.v1.p1)
rh_fusiform_thickness - Right Hemishpere Cortical Thickness: Fusiform (phv00420646.v1.p1)
rh_inferiorparietal_thickness - Right Hemishpere Cortical Thickness: Inferior parietal (phv00420647.v1.p1)
rh_inferiortemporal_thickness - Right Hemishpere Cortical Thickness: Inferior temporal (phv00420648.v1.p1)
rh_insula_thickness - Right Hemishpere Cortical Thickness: Insula (phv00420649.v1.p1)
rh_isthmuscingulate_thickness - Right Hemishpere Cortical Thickness: Isthmus cingulate (phv00420650.v1.p1)
rh_lateraloccipital_thickness - Right Hemishpere Cortical Thickness: Lateral occipital (phv00420651.v1.p1)
rh_lateralorbitofrontal_thickness - Right Hemishpere Cortical Thickness: Lateral orbitofrontal (phv00420652.v1.p1)
rh_lingual_thickness - Right Hemishpere Cortical Thickness: Lingual (phv00420653.v1.p1)
rh_medialorbitofrontal_thickness - Right Hemishpere Cortical Thickness: Medial orbitofrontal (phv00420654.v1.p1)
rh_middletemporal_thickness - Right Hemishpere Cortical Thickness: Middle temporal (phv00420655.v1.p1)
rh_paracentral_thickness - Right Hemishpere Cortical Thickness: Paracentral (phv00420656.v1.p1)
rh_parahippocampal_thickness - Right Hemishpere Cortical Thickness: Parahippocampal (phv00420657.v1.p1)
rh_parsopercularis_thickness - Right Hemishpere Cortical Thickness: Pars opercularis (phv00420658.v1.p1)
rh_parsorbitalis_thickness - Right Hemishpere Cortical Thickness: Pars orbitalis (phv00420659.v1.p1)
rh_parstriangularis_thickness - Right Hemishpere Cortical Thickness: Pars triangularis (phv00420660.v1.p1)
rh_pericalcarine_thickness - Right Hemishpere Cortical Thickness: Pericalcarine (phv00420661.v1.p1)
rh_postcentral_thickness - Right Hemishpere Cortical Thickness: Postcentral (phv00420662.v1.p1)
rh_posteriorcingulate_thickness - Right Hemishpere Cortical Thickness: Posterior cingulate (phv00420663.v1.p1)
rh_precentral_thickness - Right Hemishpere Cortical Thickness: Precentral (phv00420664.v1.p1)
rh_precuneus_thickness - Right Hemishpere Cortical Thickness: Precuneus (phv00420665.v1.p1)
rh_rostralanteriorcingulate_thickness - Right Hemishpere Cortical Thickness: Rostral anterior cingulate (phv00420666.v1.p1)
rh_rostralmiddlefrontal_thickness - Right Hemishpere Cortical Thickness: Rostral middle frontal (phv00420667.v1.p1)
rh_superiorfrontal_thickness - Right Hemishpere Cortical Thickness: Superior frontal (phv00420668.v1.p1)
rh_superiorparietal_thickness - Right Hemishpere Cortical Thickness: Superior parietal (phv00420669.v1.p1)
rh_superiortemporal_thickness - Right Hemishpere Cortical Thickness: Superior temporal (phv00420670.v1.p1)
rh_supramarginal_thickness - Right Hemishpere Cortical Thickness: Supramarginal (phv00420671.v1.p1)
rh_temporalpole_thickness - Right Hemishpere Cortical Thickness: Temporal pole (phv00420672.v1.p1)
rh_transversetemporal_thickness - Right Hemishpere Cortical Thickness: Transverse temporal (phv00420673.v1.p1)
rh.total - Right Hemishpere Cortical Thickness: Total (phv00420639.v1.p1)

Race and Ethnicity (8)

Ethnicity - Ethnicity (phv00420691.v1.p1)
PrimaryRace - Primary Race (phv00420690.v1.p1)
Race_AmericanIndianorAKnative - Race: American Indian or Alaska Native (phv00420681.v1.p1)
Race_Asian - Race: Asian (phv00420682.v1.p1)
Race_BlackorAfricanAmerican - Race: Black or African American (phv00420683.v1.p1)
Race_NativeHIorPacificIslander - Race: Native Hawaiian or Other Pacific Islander (phv00420684.v1.p1)
Race_Other - Race: Other (phv00420685.v1.p1)
Race_White - Race: White (phv00420689.v1.p1)

Other (41)

consent - Consent Group (phv00389356.v1.p1)
DMCC_record_id - Data Management Coordinating Center Internal Identifier (phv00420697.v1.p1)
DMCC_record_id - Data Managament Coordinating Center Internal Identifier (phv00420709.v1.p1)
DMCC_record_id - Data Management Coordinating Center Internal Identifier (phv00389373.v1.p1)
DOBNotAllowed - Date of Birth not allowed by local institutions IRB ethics committee (phv00420678.v1.p1)
DystoniaProject_Project1 - Dystonia Project: Project 1 (phv00420702.v1.p1)
DystoniaProject_Project2 - Dystonia Project: Project 2 (phv00420703.v1.p1)
DystoniaProject_Project3 - Dystonia Project: Project 3 (phv00420704.v1.p1)
DystoniaProject_Project4 - Dystonia Project: Project 4 (phv00420705.v1.p1)
Form_Name - Form Name (phv00420694.v1.p1)
Form_Name - Form Name (phv00420706.v1.p1)
Form_Name - Form Name (phv00389370.v1.p1)
Form_Status - Form Status (phv00420696.v1.p1)
Form_Status - Form Status (phv00420708.v1.p1)
Form_Status - Form Status (phv00420674.v1.p1)
LINCL - Weill Cornell LINCL Score (phv00389360.v1.p1)
maskid - Masked Participant Identifier (phv00420602.v1.p1)
maskid - Masked Participant Identifier (phv00420677.v1.p1)
maskid - Masked Participant Identifier (phv00420699.v1.p1)
maskid - Masked Participant Identifier (phv00389365.v1.p1)
maskid - Masked Participant Identifier (phv00389357.v1.p1)
maskid - Masked Participant Identifier (phv00420713.v1.p1)
maskid - (Masked) Subject Identifier (unique key) (phv00389355.v1.p1)
MRIDSS - MRI Disease Severity Score (phv00389364.v1.p1)
Participant_Cycle_Number - Participant Cycle # (phv00389371.v1.p1)
ParticipantCompletedStudy - Participant completed entire study (phv00389366.v1.p1)
ParticipantNotCompleteStudy - Participant withdrawn from study prior to end (phv00389367.v1.p1)
Protocol - RDCRN Protocol # (phv00420715.v1.p1)
Race_Refused - Race: Refused (phv00420686.v1.p1)
Race_Unknown - Race: Unknown (phv00420687.v1.p1)
Race_Unknownornotreported - Race: Unknown or not reported (phv00420688.v1.p1)
RaDaRGUID - Rare Diseases Registry Program formerly GRDR GUID (phv00420692.v1.p1)
ReenterRaDaRGUID - Reenter GUID for verification (phv00420693.v1.p1)
SignedInformedConsentAssent - Did participant sign informed consentassent form (phv00420701.v1.p1)
Status - Participant Status (phv00420714.v1.p1)
SubjectEligible - Is subject eligible to participate in the study (phv00420700.v1.p1)
Visit - Visit (phv00420695.v1.p1)
Visit - Visit (phv00420707.v1.p1)
Visit - Visit (phv00389372.v1.p1)
WithdrawalReason - Reason for early withdrawal (phv00389368.v1.p1)
WithdrawalReasonOthr - Reason for early withdrawal Other (phv00389369.v1.p1)