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Scott Troyan edited this page Nov 7, 2024 · 10 revisions

SSBC/PBN Phenotypic Collection

Instruments

Administration, Demographics, and Tracking instruments can be entered by users confirmed trained by their site lead. Clinical Assessment instruments can only be entered by a certified clinical assessor.

Admin/Demographics

  • ID Administration
  • Pre-entry Summary
  • Visit Status
  • Demographics

Clinical Assessment

  • Medical History
  • COVID-19
  • Medications
  • Occupation & Education
  • General Probes
  • General Probes Hospitalization
  • SIPS 5
  • PANSS (D1)
  • Columbia Suicide Severity Rating Scale Adult (CSSRS-A)
  • Global Functioning: Social
  • Global Functioning: Role
  • Social and Occupational Functioning Assessment Scale (SOFAS)
  • DSM-5 Diagnosis
  • PNC Substance Use Questionnaire

Tracking

  • Pre-LP Physical & Blood Test
  • Neuroimaging Tracking
  • Biosample Collection
  • Biosample Collection [Urine]

Missing Data Codes

  • UNK, Unknown
  • NA, Not applicable
  • M, Missing
  • UR, Unable to rate

Changes

2024-11-07

PBN Changes

Added instruments

  • Young Mania Rating Scale (YMRS)
  • Quick Inventory of Depressive Symptomatology (Semi-structured Interview) (QIDS-C SSI)
  • Pittsburgh Sleep Quality Index (PSQI)
  • Morningness-Eveningness Questionnaire (MEQ) [BD2 Mod]
  • Adverse Childhood Experiences (ACE) [v2]

Added events

  • Removed MRI/Neuroimaging/sample forms from six month visits

2024-06-28

Added instruments

  • MRI forms

2023-11-06

Added instrument

  • Medical History Update

2023-10-12

Removed fields

  • prelp_physical_weight
  • prelp_physical_height

Updated fields

  • local_csf_total_protein to mg/dL

2023-08-22

Added fields

  • visit_date to Visit Status
  • visit_end_date to Visit Status
  • med_covid19 to Medical History
  • med_covid19_hospitalized to Medical History
  • psy_pd_any to DSM-5 Diagnosis
  • psy_pd_onset_age to DSM-5 Diagnosis
  • psy_pd_source to DSM-5 Diagnosis

2023-07-20

Added field

  • visit_status for missing visits

2022-07-01

Added instruments

  • Global Assessment of Functioning (GAF-M)
  • [SIPS 5] Schizotypal Personality Disorder Criteria
  • [SIPS 5] Summary of SIPS Syndrome Criteria
  • DSM-5 Diagnosis
  • [SIPS 5] Family History Of Mental Illness

2022-05-26

  • Added followup prompt and notes to relevant sections
  • Added followup items to CSSRS-A

Added fields

  • prelp_blood_pt
  • prelp_blood_ptt

Removed field

  • prelp_blood_pt_ptt

Relabled fields

  • prelp_blood_pt_inr_ordered
  • prelp_blood_pt_inr_reason
  • prelp_blood_pt_inr

2022-03-16

Added fields

  • local_paired_oligoclonal_bands
  • local_paired_oligoclonal_bands_num

2022-02-04

Added fields

  • local_blood_oligoclonal_bands
  • local_blood_oligoclonal_bands_num
  • local_csf_oligoclonal_bands
  • local_csf_oligoclonal_bands_num

Removed fields

  • local_blood_oligoclonal
  • local_csf_oligoclonal

Updated fields

  • local_csf_wbcl_count to cells/µl
  • local_csf_rbc_count to cells/µl
  • local_csf_albumin to mg/dL

2021-12-10

  • Removed NetSCID tracking instrument

2021-10-08

  • Added "Declined to participate after enrollment" to study_status
  • Added "UR, Unable to rate" to the missing data codes

2021-09-24

  • Added "Excluded after enrollment" to study_status

2021-07-23

  • Added date of enrollment to ID Administration

Medications

Medications are entered and coded using RxNorm nomenclature.

RxNorm

RxNorm provides normalized names for clinical drugs and links its names to many of the drug vocabularies commonly used in pharmacy management and drug interaction software, including those of First Databank, Micromedex, Multum, and Gold Standard Drug Database. By providing links between these vocabularies, RxNorm can mediate messages between systems not using the same software and vocabulary.

The Anatomical Therapeutic Chemical (ATC) Classification

The Anatomical Therapeutic Chemical (ATC) classification, a system developed by the World Health Organization (WHO) Collaborating Centre for Drug Statistics Methodology, is recommended for worldwide use to compile drug utilization statistics.

RxNorm medications are represented only once however WHO-ATC codes can have multiple codes for the same RXNORM medications, depending on the anatomical system or therapeutic domain in which it is used.

As a consequence there may be multiple ATC mappings for a given medication. Here we have used only the first mapping from ATC. It is recommended to look at the medication itself before analyzing just the levels of ATC.

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