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DD = Data Dictionary
DCW = Data Collection Worksheet

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Essential Protocols

Total Protocols in My Toolkit: 46
	Adoption of Genetic Services: Healthcare Settings Reach Effectiveness Adoption Implementation Maintenance (RE-AIM) Checklist for Study or Intervention Planning Remove
	Awareness of Pharmacogenomics Daud, A. N. A., et al. (2017). Knowledge and attitude regarding pharmacogenetics among formerly pregnant women in the Netherlands and their interest in pharmacogenetic research. BMC Pregnancy Childbirth, 17(1), 120. Check all Current Age Add to Toolkit Remove
	Baseline Knowledge of Genomics University of North Carolina Genomic Knowledge Scale (UNC-GKS) Check all Annual Household Family Income and Number of People Supported Current Age Educational Attainment - Individual Ethnicity and Race Add to Toolkit Remove
	Clinician Confidence in Returning Genetic Test Results Clinical Sequencing Evidence-Generating Research Consortium (CSER) Provider Measures - Post-Return of Results Follow-up #1 & Electronic Medical Records and Genomics (eMERGE) Post-Return of Results Provider Follow-up Questionnaire Remove
	Information Sources for Patients after Return of Results Information Seeking V2 from the Clinical Sequencing Evidence-Generating Research (CSER) Adult Patient Measures - Post-Return of Results Follow-up #2 (5-7 months post-Return of Results) Check all Current Age Add to Toolkit Remove
	Organizational Readiness for Change Organizational Readiness for Implementing Change (ORIC) Check all Current Age Ethnicity and Race Add to Toolkit Remove
	Patient Empowerment After Genetic Services and Counseling - Genomics Outcome Scale (GOS) Genomics Outcome Scale (GOS) Remove
	Patient Response to Genetic Testing Feelings About genomiC Testing Results (FACToR) Remove
	Patient Satisfaction with Genetic Counseling Genetic Counseling Satisfaction Scale (GCSS) Remove
	Perceived Compatibility with Current Clinical Practice Implementing GeNomics In pracTicE (IGNITE) Pre-implementation Provider Survey Remove
	Program Evaluation: Patient Uptake of Genetic Services Reach Effectiveness Adoption Implementation and Maintenance (RE-AIM) Checklist for Study or Intervention Planning Check all Current Age Ethnicity and Race Add to Toolkit Remove
	Regret about Healthcare Decisions Decision Regret Scale Check all Current Age Add to Toolkit Remove
	Relative Advantage of a Genomic Medicine Intervention over Current Practice Implementing GeNomics In pracTicE (IGNITE) Pre-implementation Provider Survey Remove
	Sharing Genomic Information with Relatives Family Communication from the Clinical Sequencing Evidence-Generating Research (CSER) Adult Patient Measures - Post-Return of Results Follow-up #2 (5-7 months post-Return of Results) & Electronic Medical Records and Genomics (eMERGE) Family Communication of Genetic Results Check all Current Age Add to Toolkit Remove
	Understanding Health Implications of Genomics KnowGene Check all Annual Household Family Income and Number of People Supported Current Age Educational Attainment - Individual Ethnicity and Race Add to Toolkit Remove
	Anxiety Disorders Screener - Adult Composite International Diagnostic Interview Screening Scales (CIDI-SC) 5.0, Anxiety Check all Current Age Add to Toolkit Remove
	Anxiety Disorders Symptoms - Adult Symptom Check List 90 (SCL-90) Check all Current Age Add to Toolkit Remove
	Anxiety Disorders Symptoms - Children - Parent Report The Screen for Child Anxiety Related Emotional Disorders (SCARED), Parent Report Version Check all Current Age Add to Toolkit Remove
	Anxiety Disorders Symptoms - Children - Self-Report The Screen for Child Anxiety Related Emotional Disorders (SCARED), Self-Report Version Check all Current Age Add to Toolkit Remove
	Attention-Deficit Hyperactivity Disorder Symptoms - Adult The Adult Attention-Deficit Hyperactivity Disorder Self-Report Scale (ASRS-v1.1) Remove
	Attention-Deficit Hyperactivity Disorder Symptoms - Child The Strengths and Weaknesses of Attention-Deficit/Hyperactivity Disorder Symptoms and Normal Behavior Scale (SWAN) Remove
	Depression Screener - Adults Composite International Diagnostic Interview Screening Scales (CIDI-SC) 5.0, Depression Check all Current Age Add to Toolkit Remove
	Depressive Symptoms - Adult The Quick Inventory of Depressive Symptoms (QIDS) Check all Current Age Add to Toolkit Remove
	Depressive Symptoms - Child Mood and Feelings Questionnaire (MFQ) Check all Current Age Add to Toolkit Remove
	Depressive Symptoms - Depression in Dementia The Cornell Scale for Depression in Dementia Check all Current Age Add to Toolkit Remove
	Depressive Symptoms - Geriatric Geriatric Depression Scale (GDS) - Short Form Check all Current Age Add to Toolkit Remove
	Eating Disorder Screener for DSM-5 Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) & The Eating Disorder Diagnostic Scale (EDDS-5) Check all Body Image Current Age Ethnicity and Race Height - Knee Height Height - Recumbent Length Height - Self-Reported Height Height - Standing Height Weight - Measured Weight Weight - Self-Reported Weight Add to Toolkit Remove
	Eating Disorder Screener for DSM-IV Diagnostic and Statistical Manual of Mental Disorders (DSM-IV), The Eating Disorder Diagnostic Scale (EDDS) Check all Body Image Current Age Ethnicity and Race Height - Knee Height Height - Recumbent Length Height - Self-Reported Height Height - Standing Height Weight - Measured Weight Weight - Self-Reported Weight Add to Toolkit Remove
	General Distress Screener The K6 Check all Current Age Ethnicity and Race Add to Toolkit Remove
	Global Psychopathology Rating Scale - Clinical Brief Psychiatric Rating Scale Check all Current Age Current Marital Status Add to Toolkit Remove
	Global Psychopathology Rating Scale - Research Positive and Negative Syndrome Scale (PANSS) Check all Current Age Current Marital Status Add to Toolkit Remove
	Lack of Prosocial Emotions - Children - Preschool Parent Report Inventory of Callous-Unemotional Traits (ICU) Remove
	Lack of Prosocial Emotions - Children - Preschool Teacher-report Version Inventory of Callous-Unemotional Traits (ICU) Remove
	Lack of Prosocial Emotions - Children - Self-report Version Inventory of Callous-Unemotional Traits (ICU) Remove
	Lack of Prosocial Emotions - Children - Teacher-report Version Inventory of Callous-Unemotional Traits (ICU) Remove
	Personality Traits The Big Five Inventory (BFI) Check all Current Age Add to Toolkit Remove
	Psychopathy - Adult Triarchic Psychopathy Measure (TriPM) Remove
	PTSD Symptoms and Diagnosis in Children and Adolescents - DSM-4 University of California, Los Angeles, Post-traumatic Stress Disorder Reaction Index (UCLA PTSD Index), DSM-4 Remove
	PTSD Symptoms and Diagnosis in Children and Adolescents - DSM-5 University of California, Los Angeles, Post-traumatic Stress Disorder Reaction Index (UCLA PTSD Index), DSM-5 Remove
	PTSD Symptoms, Self-report - DSM 5 PTSD Checklist for DMS-5 (PCL-5) Check all General Distress Screener Life Events - Child Add to Toolkit Remove
	PTSD Symptoms, Self-report - DSM-IV PTSD Checklist for DSM-4 Check all General Distress Screener Life Events - Child Add to Toolkit Remove
	Sleep Disorders Screener National Institute of Mental Health (NIMH), Sleep Patterns and Problems Check all Current Age Add to Toolkit Remove
	Sleep Disorders Screener - Children The Sleep Disturbance Scale for Children (SDSC) Check all Current Age Add to Toolkit Remove
	Symptoms of Autism Spectrum Disorders - Adolescent Symptoms of Autism Spectrum Disorders - Adolescent Check all Current Age Add to Toolkit Remove
	Symptoms of Autism Spectrum Disorders - Adult The Autism Spectrum Quotient - Adult Version Check all Current Age Add to Toolkit Remove
	Symptoms of Autism Spectrum Disorders - Child The Childhood Autism Spectrum Test (CAST) Check all Current Age Add to Toolkit Remove
Total Protocols in My Toolkit: 46

Essential Protocols are needed to interpret your data. Add all Essential Protocols to your Toolkit.

Create Citations

To cite protocols in My Toolkit, copy & paste the text below:

PhenX Toolkit. (2026 February 27). Adoption of Genetic Services: Healthcare Settings. https://www.phenxtoolkit.org/protocols/view/310201

PhenX Toolkit. (2026 February 27). Awareness of Pharmacogenomics. https://www.phenxtoolkit.org/protocols/view/310301

PhenX Toolkit. (2026 February 27). Baseline Knowledge of Genomics. https://www.phenxtoolkit.org/protocols/view/310401

PhenX Toolkit. (2026 February 27). Clinician Confidence in Returning Genetic Test Results. https://www.phenxtoolkit.org/protocols/view/310501

PhenX Toolkit. (2026 February 27). Information Sources for Patients after Return of Results. https://www.phenxtoolkit.org/protocols/view/310601

PhenX Toolkit. (2026 February 27). Organizational Readiness for Change. https://www.phenxtoolkit.org/protocols/view/310701

PhenX Toolkit. (2026 February 27). Patient Empowerment After Genetic Services and Counseling - Genomics Outcome Scale (GOS). https://www.phenxtoolkit.org/protocols/view/310801

PhenX Toolkit. (2026 February 27). Patient Response to Genetic Testing. https://www.phenxtoolkit.org/protocols/view/310901

PhenX Toolkit. (2026 February 27). Patient Satisfaction with Genetic Counseling. https://www.phenxtoolkit.org/protocols/view/311001

PhenX Toolkit. (2026 February 27). Perceived Compatibility with Current Clinical Practice. https://www.phenxtoolkit.org/protocols/view/311101

PhenX Toolkit. (2026 February 27). Program Evaluation: Patient Uptake of Genetic Services. https://www.phenxtoolkit.org/protocols/view/311201

PhenX Toolkit. (2026 February 27). Regret about Healthcare Decisions. https://www.phenxtoolkit.org/protocols/view/311301

PhenX Toolkit. (2026 February 27). Relative Advantage of a Genomic Medicine Intervention over Current Practice. https://www.phenxtoolkit.org/protocols/view/311401

PhenX Toolkit. (2026 February 27). Sharing Genomic Information with Relatives. https://www.phenxtoolkit.org/protocols/view/311501

PhenX Toolkit. (2026 February 27). Understanding Health Implications of Genomics. https://www.phenxtoolkit.org/protocols/view/311601

PhenX Toolkit. (2026 February 27). Anxiety Disorders Screener - Adult. https://www.phenxtoolkit.org/protocols/view/120203

PhenX Toolkit. (2026 February 27). Anxiety Disorders Symptoms - Adult. https://www.phenxtoolkit.org/protocols/view/121803

PhenX Toolkit. (2026 February 27). Anxiety Disorders Symptoms - Children - Parent Report. https://www.phenxtoolkit.org/protocols/view/121801

PhenX Toolkit. (2026 February 27). Anxiety Disorders Symptoms - Children - Self-Report. https://www.phenxtoolkit.org/protocols/view/121802

PhenX Toolkit. (2026 February 27). Attention-Deficit Hyperactivity Disorder Symptoms - Adult. https://www.phenxtoolkit.org/protocols/view/121501

PhenX Toolkit. (2026 February 27). Attention-Deficit Hyperactivity Disorder Symptoms - Child. https://www.phenxtoolkit.org/protocols/view/121502

PhenX Toolkit. (2026 February 27). Depression Screener - Adults. https://www.phenxtoolkit.org/protocols/view/120503

PhenX Toolkit. (2026 February 27). Depressive Symptoms - Adult. https://www.phenxtoolkit.org/protocols/view/121701

PhenX Toolkit. (2026 February 27). Depressive Symptoms - Child. https://www.phenxtoolkit.org/protocols/view/121702

PhenX Toolkit. (2026 February 27). Depressive Symptoms - Depression in Dementia. https://www.phenxtoolkit.org/protocols/view/121703

PhenX Toolkit. (2026 February 27). Depressive Symptoms - Geriatric. https://www.phenxtoolkit.org/protocols/view/121704

PhenX Toolkit. (2026 February 27). Eating Disorder Screener for DSM-5. https://www.phenxtoolkit.org/protocols/view/120602

PhenX Toolkit. (2026 February 27). Eating Disorder Screener for DSM-IV. https://www.phenxtoolkit.org/protocols/view/120601

PhenX Toolkit. (2026 February 27). General Distress Screener. https://www.phenxtoolkit.org/protocols/view/121301

PhenX Toolkit. (2026 February 27). Global Psychopathology Rating Scale - Clinical. https://www.phenxtoolkit.org/protocols/view/122102

PhenX Toolkit. (2026 February 27). Global Psychopathology Rating Scale - Research. https://www.phenxtoolkit.org/protocols/view/122101

PhenX Toolkit. (2026 February 27). Lack of Prosocial Emotions - Children - Preschool Parent Report. https://www.phenxtoolkit.org/protocols/view/121602

PhenX Toolkit. (2026 February 27). Lack of Prosocial Emotions - Children - Preschool Teacher-report Version. https://www.phenxtoolkit.org/protocols/view/121603

PhenX Toolkit. (2026 February 27). Lack of Prosocial Emotions - Children - Self-report Version. https://www.phenxtoolkit.org/protocols/view/121604

PhenX Toolkit. (2026 February 27). Lack of Prosocial Emotions - Children - Teacher-report Version. https://www.phenxtoolkit.org/protocols/view/121605

PhenX Toolkit. (2026 February 27). Personality Traits. https://www.phenxtoolkit.org/protocols/view/121101

PhenX Toolkit. (2026 February 27). Psychopathy - Adult. https://www.phenxtoolkit.org/protocols/view/121601

PhenX Toolkit. (2026 February 27). PTSD Symptoms and Diagnosis in Children and Adolescents - DSM-4. https://www.phenxtoolkit.org/protocols/view/121902

PhenX Toolkit. (2026 February 27). PTSD Symptoms and Diagnosis in Children and Adolescents - DSM-5. https://www.phenxtoolkit.org/protocols/view/121901

PhenX Toolkit. (2026 February 27). PTSD Symptoms, Self-report - DSM 5. https://www.phenxtoolkit.org/protocols/view/122002

PhenX Toolkit. (2026 February 27). PTSD Symptoms, Self-report - DSM-IV. https://www.phenxtoolkit.org/protocols/view/122001

PhenX Toolkit. (2026 February 27). Sleep Disorders Screener. https://www.phenxtoolkit.org/protocols/view/121001

PhenX Toolkit. (2026 February 27). Sleep Disorders Screener - Children. https://www.phenxtoolkit.org/protocols/view/121002

PhenX Toolkit. (2026 February 27). Symptoms of Autism Spectrum Disorders - Adolescent. https://www.phenxtoolkit.org/protocols/view/120902

PhenX Toolkit. (2026 February 27). Symptoms of Autism Spectrum Disorders - Adult. https://www.phenxtoolkit.org/protocols/view/120901

PhenX Toolkit. (2026 February 27). Symptoms of Autism Spectrum Disorders - Child. https://www.phenxtoolkit.org/protocols/view/120903

Data Dictionary and Data Collection Worksheet

Data Collection Worksheet (DCW): The DCW identifies each data and metadata item to be collected as required by the protocol. The DCW is provided as an MS Word document to facilitate easy integration into existing study documentation.

Data Dictionary (DD): The DD lists each variable collected by a protocol data collection worksheet (DCW) and its attributes. DDs are available in three formats: 1) RTF format captures skip patterns commonly used in epidemiologic studies; 2) CSV format is compatible with the database of Genotypes and Phenotypes (dbGaP) data submission packet; 3) REDCap ZIP file format is suitable for upload to studies being implemented in REDCap.

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