Skip to content

RareCNV Phenotypic Collection

Jump to bottom
Scott Troyan edited this page Mar 19, 2024 · 9 revisions

Instruments

Demographics

  • Genomics Tracking (repeatable instrument)
  • Demographics
  • Substance History
  • Developmental History
  • Medical History
  • Mental Health Treatment History
  • Medications (repeatable instrument)
  • SIPS Ratings
  • CAARMS Ratings
  • Core Psychopathology

Event name: demographics_arm_1

Core Psychopathology assessment DOIs

IQ Measures

  • WASI (I)
  • WASI-II
  • WISC-III
  • WISC-IV
  • WISC-V
  • WAIS-III
  • WAIS-III (Short-NL)
  • WAIS-IV
  • WPPSI-IV
  • Leiter-3
  • Leiter-R
  • Vineland Adaptive Behavior Scales (VABS)

Event name: iq_measures_arm_1

Proband Assessment

  • General Probes
  • Overanxious/GAD
  • Separation Anxiety
  • ADHD [short]
  • Specific Phobia
  • Social Anxiety
  • Panic Disorder
  • OCD
  • Depression [short]
  • Mania [short]
  • Suicide [short]
  • PTSD [short]
  • Other Disorders
  • Repetitive Behavioral Scale - Revised (RBS-R)

Event name: proband_assessment_arm_1

Family Assessment

  • Family Assessment

Event name: family_assessment_arm_1

Retired instruments

  • Cognitive Measures/IQ Measures

Missing Data Codes

  • UNK, Unknown
  • NA, Not applicable
  • M, Missing

Medications Coding

Medications are entered using RxNORM. Codings can be accessed at NCBO BioPortal:

Changes

2024-03-19

Removed the original IQ entry form completely (deprecated 2021-07-09): "Intelligence/IQ Measures"

2023-10-02

Core Psychopathology update:

  • Added
    • psy_asd_core_1
    • psy_asd_core_2

2023-07-18

Core Psychopathology updates:

  • New option added to Core Symptoms and "Any DSM-5 Diagnosis fields”

    • “3, Presumed absent because excluded or not mentioned”

  • New Source Category Fields

    • psy_dep_source_category
    • psy_bpd_source_category
    • psy_pd_source_category
    • psy_anx_source_category
    • psy_ocd_source_category
    • psy_adhd_source_category
    • psy_odd_source_category
    • psy_asd_source_category
    • psy_id_source_category
    • psy_ld_source_category

  • Added

    • psy_adhd_core_1_core_2 (replaces psy_adhd_core_1 and psy_adhd_core_2)
    • psy_adhd_core_3_core_4 (replaces psy_adhd_core_3 and psy_adhd_core_4)

  • Removed

    • psy_adhd_core_1
    • psy_adhd_core_2
    • psy_adhd_core_3
    • psy_adhd_core_4

2022-05-20

  • Added K-SADS to Core Psychopathology assessment options for appropriate categories

2022-01-12

  • Added Genomics Tracking instrument

2021-12-07

  • Added two new options to psy_id
    • Borderline Intellectual Functioning
    • Profound Intellectual Disability
  • Removed "GOASSESS" as an option for psy_pd_source_asmt

2021-10-08

  • Added "22q Duplication & 16p Duplication" option to group_classification

2021-08-10

  • New IQ measures added:
    • WAIS-III (Short-NL)

2021-07-09

  • New event for IQ Measures
    • Event name: iq_measures_arm_1
  • New IQ measures added:
    • WASI (I)
    • WASI-II
    • WISC-III
    • WISC-IV
    • WISC-V
    • WAIS-III
    • WAIS-IV
    • WPPSI-IV
    • Leiter-3
    • Leiter-R
  • Vineland Adaptive Behavior Scales entry moved to a separate instrument

2021-04-22

  • New fields added to Demographics:
    • dem_gender_identity
    • gender_identity_other

2021-03-02

  • New fields added for affected subjects:
    • group_fish
    • group_16p_type
    • group_22q_type
    • group_22q_type_other
  • New field: affected_unknown for subjects with an unknown status at time of assessment

2020-10-15

  • Each category requires a Source of Diagnosis
    • Standardized assessments
    • Clinical records/reports by a clinician (can be inpatient/outpatient)
    • School records
    • Family care provider report
    • Self-report
    • Own observation during assessment
    • If “Standardized assessments” is selected, the assessment(s) used must be entered.
  • The Intellectual Disability (ID) and Learning Disability (LD) variable has been replaced and expanded
    • Any data previously entered will be need to be re-entered based on the new options for all records. New subtypes for Specific Learning Disability have been added.
  • Other DSM-5 Diagnoses Entry
    • The Core Psychopathology has a new field for entering any other DSM-5 diagnoses that are not on the form. Enter the DSM-5 code, separated by comma if multiple (e.g. “348.62, 348.61").
  • Removal of the LD and ID fields from the Mental Health Treatment History
    • mht_relation_dx_8, mht_relation_dx_8_trt, mht_relation_dx_9, mht_relation_dx__trt have been removed.
  • Addition of the Cognitive Measures instrument
    • The Cognitive Measures instrument is entirely new to this project for entry of IQ testing.
    • Two timepoints are to be entered (if available) – Initial testing and most recent testing.

2020-07-23

  • New field: Group Classification. Required for all affected subjects.
Clone this wiki locally