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Mini-MUSIC Dataset

Overview

Mini-MUSIC is a longitudinal pediatric IBD cohort study with fixed follow-up timepoints, using age-appropriate disease activity scores and classification systems designed for children and adolescents.

Study ID Prefix: MINI-

Key Characteristics

  • Data Structure: Fixed timepoints (timepoint_1 through timepoint_3: baseline, 3 months, 6 months)
  • Participants: Pediatric only (typically <18 years)
  • Age Groups: 6-10, 10-13, 14-18 years
  • Longitudinal Follow-up: Scheduled visits at baseline and follow-up intervals
  • Focus Areas: Pediatric-specific outcomes, EEN, age-appropriate disease activity

Dataset Statistics

  • Columns: 373
  • Study Centers: Edinburgh, Glasgow, Dundee, Aberdeen
  • Study Groups: CD, UC, IBDU, non-IBD

Key Variables

Demographics & Baseline

  • study_id: Format MINI-xxx
  • redcap_event_name: timepoint_1, timepoint_2, timepoint_3
  • patient_age_group: 6-10, 10-13, 14-18, no_data
  • study_group: CD, UC, IBDU, non_ibd
  • new_diagnosis_of_ibd: yes/no
  • age, sex, height, weight, bmi
  • date_of_diagnosis, age_at_diagnosis

Pediatric Disease Activity Scores

  • Ulcerative Colitis:
  • pucai_score: Pediatric Ulcerative Colitis Activity Index (0-85)
  • Components: pucai_pain, pucai_bleeding, pucai_consistency, pucai_stools, pucai_nocturnal, pucai_activity
  • Crohn's Disease:
  • pcdai_score: Pediatric Crohn's Disease Activity Index (0-100)
  • Components: pcdai_pain, pcdai_general, pcdai_frequency, pcdai_esr, pcdai_alb, pcdai_weight, pcdai_perianal
  • EIM components: pcdai_eim_fever, pcdai_eim_arthritis, pcdai_eim_uveitis, etc.

Pediatric Classification Systems

  • Crohn's Disease: Paris Classification
  • cdparis_location: L1, L2, L3, L4
  • cdparis_behaviour: B1, B2, B3, B2+B3
  • cdparis_upper_gi: L4a, L4b, none
  • cdparis_growth: G0, G1
  • cdparis_perianal: yes/no
  • Ulcerative Colitis: Paris Classification
  • ucparis_extent: E1, E2, E3, E4
  • ucparis_severity: S0, S1

Patient-Reported Outcomes (Pediatric)

  • impact3_score: IMPACT-III total score (0-100)
  • impact_wellbeing, impact_emotional, impact_social, impact_bodyimage: IMPACT-III subscales
  • impactq1 through impactq35: Individual IMPACT-III items
  • promis_fatigue_score: PROMIS Fatigue Score
  • fatigue_severity, fatigue_standard_error, fatigue_tscore: Fatigue metrics
  • fatigueq1 through fatigueq10: Individual fatigue items

Exclusive Enteral Nutrition (EEN)

  • een_use: EEN use (yes/no)
  • een_formula_type: Modulen IBD, Fortisip, Nutrison Energy, Elemental EO28, Pediasure, Nutrini, Neocate Jr, other
  • een_formula_type_text: Free text for other formulas
  • een_start_date, een_end_date: EEN dates
  • een_still_taken: Currently on EEN (yes/no)

Disease Activity Assessment

  • has_active_symptoms: yes/no
  • physician_global_assessment: biochem_remission, clinical_remission, mild, moderate, severe
  • disease_activity: remission, mild, moderate, severe, not_applicable
  • Individual symptoms: symptoms_abdominal_pain, symptoms_diarrhoea, symptoms_urgency, symptoms_pr_bleeding, symptoms_weight_loss, symptoms_fatigue, symptoms_perianal

Laboratory Values

  • Blood parameters: haemoglobin, crp, albumin, white_cell_count, esr, etc.
  • calprotectin: Faecal calprotectin
  • calprotectin_date: Sample collection date
  • Drug levels: ifx_level, ada_level, ifx_antibody, ada_antibody
  • drug_level_date: Date of drug level testing

Medications

  • sampling_*: Medications at time of visit (1 = yes, 0 = no)
  • sampling_asa, sampling_een, sampling_steroids_oral, sampling_steroids_iv, sampling_steroids_topical
  • sampling_imm, sampling_mtx, sampling_ifx, sampling_ada
  • sampling_vedo, sampling_uste, sampling_other
  • Current drug tracking: ibd_drug_1_* through ibd_drug_5_* (name, dose, frequency, dates)
  • Baseline medication history: baseline_ibd_drug_1_* through baseline_ibd_drug_5_*
  • Concomitant non-IBD drugs: concomitant_drug_1_* through concomitant_drug_5_*

Clinical Events

  • new_flare_up: New flare since last visit
  • flare_up_1_date: Flare date
  • flare_up_1_description_*: Detailed flare symptoms (abdominal_pain, diarrhoea, urgency, etc.)
  • flare_up_1_setting: outpatient/inpatient
  • flare_up_1_management_*: Management strategies (iv_steroids, oral_steroids, een, new_biologic, other)
  • unplanned_hospital_admission: Hospital admission since last visit
  • hospital_admission_1_*: Admission details

Phenotyping

  • Extra-intestinal manifestations: baseline_eims_* (arthritis, erythema_nodosum, pyoderma, uveitis, episcleritis, sacroileitis, conjunctivitis, angular_cheilitis, psc, other)
  • Surgical history: surgical_history_*
  • Past medical history: pmh_1_diagnosis through pmh_7_diagnosis
  • Family history: fh_of_ibd_present, fh_1_* through fh_5_* (relationship, age_at_diagnosis, diagnosis)

Investigations

  • endoscopy_date, endoscopy_type_colonoscopy, endoscopy_type_upper_gi_endoscopy
  • endoscopy_report, pathology_report
  • mayo_endoscopic_findings, sescd_calc, sescd_noncalc
  • physician_endoscopic_severity: normal, mild, moderate, severe
  • radiology_test_date: CT/MRI dates
  • mri_small_bowel, mri_pelvis, ct_abdomen_pelvis: Imaging performed
  • Radiology reports available

Saliva Sampling

  • saliva_sample: Sample collected (1 = yes, 0 = no)
  • saliva_setting: Sample collection setting
  • sample_date: Date of saliva sample
  • Saliva-specific variables: saliva_eim, saliva_abx, saliva_piercing, saliva_brushing, saliva_dietibd, etc.

Data Structure Notes

Timepoint Structure

  • timepoint_1: Baseline visit
  • timepoint_2: 3 months follow-up
  • timepoint_3: 6 months follow-up

Age Groups

  • patient_age_group: Categorical grouping (6-10, 10-13, 14-18 years)
  • Used for appropriate scoring system selection

Study-Specific Features

  1. Pediatric-Specific Scores: PCDAI and PUCAI instead of adult scores (HBI, SCCAI, Mayo)
  2. Paris Classification: Pediatric-specific IBD classification system
  3. EEN Tracking: Detailed exclusive enteral nutrition data (not in adult studies)
  4. Pediatric PROs: IMPACT-III and PROMIS fatigue scores
  5. Age-Appropriate Data: All assessments designed for pediatric populations

Important Considerations

Disease Activity Scores

Mini-MUSIC uses pediatric-specific scores that cannot be directly compared to adult scores:

  • Do not compare PCDAI with HBI
  • Do not compare PUCAI with SCCAI or Mayo
  • Use Paris classification (not Montreal) for phenotype comparisons

Age Groups

When analyzing by age, consider using patient_age_group for categorical analyses or age for continuous analyses.

Missing Adult Scores

Mini-MUSIC does not include HBI, SCCAI, or Mayo scores, as these are not validated in pediatric populations.

Data Dictionary

Pipeline Documentation

Data Access

For access requests or data questions, contact the data steward listed in Dataset Governance.