My Toolkit

DD = Data Dictionary
DCW = Data Collection Worksheet

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Essential Protocols

Total Protocols in My Toolkit: 71
	Quality of Life - Pediatric Patient-Reported Outcomes Measurement Information System® (PROMIS) Item Bank, v.1.1, Pediatric Profile 25 Check all Current Age Add to Toolkit Remove
	Quality of Life - Adult Patient-Reported Outcomes Measurement Information System® (PROMIS) 29 Profile, v. 2.0 Adult Profile Check all Current Age Add to Toolkit Remove
	Quality of Care - Adults The Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me), Quality of Care Module Check all Current Age Add to Toolkit Remove
	Quality of Care - Children Consumer Assessment of Healthcare Providers and Systems (CAHPS), Health Plan Survey 4.0, Child Medicaid Questionnaire Check all Current Age Add to Toolkit Remove
	Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me), short form Check all Current Age Add to Toolkit Remove
	PedsQL Sickle Cell Disease Module The PedsQL Sickle Cell Disease Module Check all Current Age Add to Toolkit Remove
	Self-efficacy in Sickle Cell Disease The Sickle Cell Disease Self-Efficacy Scale (SCSES) Check all Current Age Add to Toolkit Remove
	Intelligence Scale - 16 to 90 years Wechsler Adult Intelligence Scale, 4th ed., (WAIS-IV) Check all Current Age Ethnicity and Race Add to Toolkit Remove
	Intelligence Scale - 2 years, 6 months to 7 years, 7 months Wechsler Preschool and Primary Scale of Intelligence, 4th ed. (WPPSI-IV) Check all Current Age Ethnicity and Race Add to Toolkit Remove
	Intelligence Scale - 6 to 16 years 11 months Wechsler Intelligence Scale for Children, 5th ed., (WISC) Check all Current Age Ethnicity and Race Add to Toolkit Remove
	Intelligence Scale - Birth to 3.5 years Bayley Scales of Infant and Toddler Development (BSID) Check all Current Age Ethnicity and Race Add to Toolkit Remove
	Adaptive Behavior/Adaptive Function Vineland Adaptive Behavior Scales., 2nd ed. (VINELAND-II) Check all Current Age Add to Toolkit Remove
	Stroke Impact Scale (SIS) - Adults The Stroke Impact Scale (SIS) Check all Current Age Add to Toolkit Remove
	Recovery and Recurrence Questionnaire (RRQ) - Pediatrics The Recovery and Recurrence Questionnaire (RRQ) Check all Current Age Add to Toolkit Remove
	NIH Stroke Scale (NIHSS) National Institutes of Health Stroke Scale (NIHSS) Check all Current Age Add to Toolkit Remove
	Pediatric NIH Stroke Scale (PedNIHSS) Pediatric National Institutes of Health Stroke Scale (PedNIHSS) Check all Current Age Add to Toolkit Remove
	Stroke Risk in Children with Sickle Cell Disease - TCD Stoke Prevention in Sickle Cell Disease (STOP) Study, Transcranial Doppler (TCD) ultrasonography Check all Current Age Add to Toolkit Remove
	Stroke Risk in Children with Sickle Cell Disease - TCDi Imaging Transcranial Doppler (TCDi) ultrasonography Check all Current Age Add to Toolkit Remove
	Sustained and Selective Attention The Conners Continuous Performance Test 3 (CPT 3™) Check all Current Age Add to Toolkit Remove
	Pain Brief Pain Inventory©(BPI), Short Form Remove This protocol is retired.
	History of Stroke - Ischemic Infarction and Hemorrhage Jackson Heart Study (JHS) Check all Current Age Ethnicity and Race Add to Toolkit Remove
	Executive Function The Trail Making Test - Adult Check all Current Age Ethnicity and Race Add to Toolkit Remove
	Executive Function - Child The Behavior Rating Inventory of Executive Function (BRIEF) Check all Current Age Ethnicity and Race Add to Toolkit Remove
	Migraine - Adult American Migraine Study II, Self-Administered Questionnaire for Migraine Check all Current Age Add to Toolkit Remove
	Migraine - Children The Pediatric Migraine Disability Assessment (PedMIDAS) Check all Current Age Add to Toolkit Remove
	Verbal Memory - Adult Wechsler Memory Scale®, Logical Memory subtest, Fourth Edition (WMS®-IV) Check all Current Age Ethnicity and Race Add to Toolkit Remove
	Verbal Memory - Child Childrens Memory Scale® (CMS), Verbal Memory subscales Check all Current Age Ethnicity and Race Add to Toolkit Remove
	Visual Memory - Adult Wechsler Memory Scale®, Visual Reproductions subtest, Fourth Edition (WMS®-IV) Check all Current Age Add to Toolkit Remove
	Visual Memory - Child Childrens Memory Scale® (CMS), Visual Memory subtest Check all Current Age Add to Toolkit Remove
	Working Memory - Adult Wechsler Adult Intelligence Scale®, Digit Span subtest, Fourth Edition (WAIS®-IV) Check all Current Age Ethnicity and Race Add to Toolkit Remove
	Working Memory - Child Childrens Memory Scale® (CMS), Attention and Concentration subtests Check all Current Age Ethnicity and Race Add to Toolkit Remove
	Motor and Attentional Impulsivity (Immediate and Delayed Memory Task) Immediate and Delayed Memory Task (IMT/DMT) Check all Current Age Add to Toolkit Remove
	Health Quality Index for Economic Evaluations - Child and Adolescent EuroQol Group - EQ-5D-Y Check all Current Age Add to Toolkit Remove
	Health Quality Index for Economic Evaluations - Adult EQ-5D-3L Check all Current Age Add to Toolkit Remove
	Impairment - Adolescent The Columbia Impairment Scale (CIS) Remove
	Impairment - Adult The World Health Organization Disability Assessment Schedule 2.0 (WHODAS 2.0) Remove
	Service Utilization and Cost Global Appraisal of Individual Needs (GAIN) Check all Current Age Add to Toolkit Remove
	Screening and Severity of Substance Use Problems - Adults - Alcohol - Past 12 Months Alcohol Use Disorders Identification Test (AUDIT) Check all Alcohol - Lifetime Use Current Age Substances - Lifetime Use Add to Toolkit Remove
	Screening and Severity of Substance Use Problems - Adolescents Treatment Improvement Protocol (TIP) Services, Simple Screening Instrument for Alcohol and Other Drugs (SSI-AOD) Check all Alcohol - Lifetime Use Current Age Substances - Lifetime Use Add to Toolkit Remove
	Screening and Severity of Substance Use Problems - Adults - Alcohol - Lifetime Brief Michigan Alcoholism Screening Test (Brief MAST) Check all Alcohol - Lifetime Use Current Age Substances - Lifetime Use Add to Toolkit Remove
	Screening and Severity of Substance Use Problems - Adults - Drugs Drug Abuse Screening Test (DAST-10) Check all Alcohol - Lifetime Use Current Age Substances - Lifetime Use Add to Toolkit Remove
	Alcohol - 30-Day Quantity and Frequency National Survey on Drug Use and Health (NSDUH), 2015 & National Institute on Alcohol Abuse and Alcoholism (NIAAA) National Epidemiologic Survey on Alcohol and Related Conditions, Wave 1 (NESARC - WAVE 1)/Alcohol Use Disorder and Associated Disabilities Interview Schedule-IV (AUDADIS-IV) Check all Alcohol - Lifetime Use Current Age Add to Toolkit Remove
	Substances - 30-Day Frequency National Survey on Drug Use and Health (NSDUH), 2015 Check all Current Age Substances - Lifetime Use Add to Toolkit Remove
	Quality of Life Enjoyment and Satisfaction - Adult Quality of Life Enjoyment and Satisfaction Questionnaire - Short Form (Q-LES-Q-SF) Check all Current Age Add to Toolkit Remove
	Quality of Life Enjoyment and Satisfaction - Children Pediatric Quality of Life Enjoyment and Satisfaction Questionnaire (PQ-LES-Q) Check all Current Age Add to Toolkit Remove
	Short Form-McGill Pain Questionnaire-2 (SF-MPQ-2) Short-form McGill Pain Questionnaire (SF-MPQ-2) Remove This protocol is retired.
	Adolescent Pediatric Pain Tool (APPT) Adolescent Pediatric Pain Tool (APPT) Remove This protocol is retired.
	Physical, Social, and Mental Health Functioning (SF-36V2) SF-36v2 Health Survey Check all Current Age Add to Toolkit Remove
	Ethnicity and Race U.S. Census Bureau, Census 2020, Questionnaire Remove
	Height - Knee Height National Health and Nutrition Examination Survey III (NHANES III), Body Measurements, 1988 Check all Current Age Add to Toolkit Remove
	Pulse Oximetry (Rest) World Health Organization (WHO), Pulse oximetry training manual, 2011 Check all Current Age Add to Toolkit Remove
	Hemoglobin Characterization Association of Public Health Laboratories (APHL) Check all Complete Blood Count (CBC) Current Age History of Transfusion Medication Inventory Reticulocyte Count Add to Toolkit Remove
	Complete Blood Count (CBC) National Health and Nutrition Examination Survey (NHANES), Laboratory procedures Manual, 2010 Check all Current Age History of Transfusion Medication Inventory Add to Toolkit Remove
	Height - Self-Reported Height National Health and Nutritional Examination Survey (NHANES) Weight History Questionnaire, 2019-2020 Check all Current Age Add to Toolkit Remove
	Current Age National Health and Nutrition Examination Survey (NHANES), 2019-2020 Remove
	Weight - Measured Weight National Health and Nutrition Examination Survey (NHANES), Anthropometry Procedures Manual, 2021-2023 Check all Current Age Add to Toolkit Remove
	Weight - Self-Reported Weight National Health and Nutrition Examination Survey (NHANES), Anthropometry Procedures Manual, 2019-2020 Check all Current Age Add to Toolkit Remove
	Height - Recumbent Length National Health and Nutrition Examination Survey (NHANES), Anthropometry Procedures Manual, 2021-2023 Check all Current Age Add to Toolkit Remove
	Height - Standing Height National Health and Nutrition Examination Survey (NHANES), Anthropometry Procedures Manual, 2021-2023 Check all Current Age Add to Toolkit Remove
	Overactive Bladder Symptoms and Quality of Life Overactive Bladder Short Form Questionnaire (OAB-q SF) Check all Current Age Add to Toolkit Remove
	Testosterone Level - Bioassay National Health and Nutrition Examination Survey (NHANES) 2011-2012, Total Testosterone Check all Current Age Add to Toolkit Remove
	Priapism Impact Priapism Impact Profile (PIP) Questionnaire Check all Current Age Add to Toolkit Remove
	Perimenopausal Symptoms The Greene Climacteric Scale Check all Current Age Add to Toolkit Remove
	Fertility and Quality of Life FertiQoL (Fertility Quality of Life tool) Check all Current Age Add to Toolkit Remove
	Female Contraception Use and Preference in Sickle Cell Disease Female Contraception Survey Check all Current Age Add to Toolkit Remove
	Offspring and Fertility History Childhood Cancer Survivor Study (CCSS) Check all Current Age Add to Toolkit Remove
	Sexual Function and Satisfaction - Female PROMIS® v2.0 Brief Profile Sexual Function and Satisfaction (Female) Check all Current Age Add to Toolkit Remove
	Sexual Function and Satisfaction - Male PROMIS® v2.0 Brief Profile Sexual Function and Satisfaction (Male) Check all Current Age Add to Toolkit Remove
	Hormone Therapy National Health and Nutrition Examination Survey (NHANES) Check all Current Age Add to Toolkit Remove
	Sickle Cell Disease Pain Associated with Menstruation Sharma et al. Acute vaso-occlusive pain is temporally associated with the onset of menstruation in women with sickle cell disease. J Women’s Health (Larchmt), 2019. Demographic survey. Check all Current Age Menstrual History Sickle Cell Disease Pain Associated with Menstruation - Quality of Life Add to Toolkit Remove
	Sickle Cell Disease Pain Associated with Menstruation - Quality of Life Modified version of the Sickle Cell Disease Pain Burden Interview-Youth (SCPBI-Y) Check all Current Age Menstrual History Sickle Cell Disease Pain Associated with Menstruation Add to Toolkit Remove
Total Protocols in My Toolkit: 71

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 26). Quality of Life - Pediatric. https://www.phenxtoolkit.org/protocols/view/221301

PhenX Toolkit. (2026 February 26). Quality of Life - Adult. https://www.phenxtoolkit.org/protocols/view/221302

PhenX Toolkit. (2026 February 26). Quality of Care - Adults. https://www.phenxtoolkit.org/protocols/view/820101

PhenX Toolkit. (2026 February 26). Quality of Care - Children. https://www.phenxtoolkit.org/protocols/view/820102

PhenX Toolkit. (2026 February 26). Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). https://www.phenxtoolkit.org/protocols/view/820201

PhenX Toolkit. (2026 February 26). PedsQL Sickle Cell Disease Module. https://www.phenxtoolkit.org/protocols/view/820202

PhenX Toolkit. (2026 February 26). Self-efficacy in Sickle Cell Disease. https://www.phenxtoolkit.org/protocols/view/820401

PhenX Toolkit. (2026 February 26). Intelligence Scale - 16 to 90 years. https://www.phenxtoolkit.org/protocols/view/820501

PhenX Toolkit. (2026 February 26). Intelligence Scale - 2 years, 6 months to 7 years, 7 months. https://www.phenxtoolkit.org/protocols/view/820502

PhenX Toolkit. (2026 February 26). Intelligence Scale - 6 to 16 years 11 months. https://www.phenxtoolkit.org/protocols/view/820503

PhenX Toolkit. (2026 February 26). Intelligence Scale - Birth to 3.5 years. https://www.phenxtoolkit.org/protocols/view/820504

PhenX Toolkit. (2026 February 26). Adaptive Behavior/Adaptive Function. https://www.phenxtoolkit.org/protocols/view/820601

PhenX Toolkit. (2026 February 26). Stroke Impact Scale (SIS) - Adults. https://www.phenxtoolkit.org/protocols/view/820701

PhenX Toolkit. (2026 February 26). Recovery and Recurrence Questionnaire (RRQ) - Pediatrics. https://www.phenxtoolkit.org/protocols/view/820702

PhenX Toolkit. (2026 February 26). NIH Stroke Scale (NIHSS). https://www.phenxtoolkit.org/protocols/view/820801

PhenX Toolkit. (2026 February 26). Pediatric NIH Stroke Scale (PedNIHSS). https://www.phenxtoolkit.org/protocols/view/820802

PhenX Toolkit. (2026 February 26). Stroke Risk in Children with Sickle Cell Disease - TCD. https://www.phenxtoolkit.org/protocols/view/821001

PhenX Toolkit. (2026 February 26). Stroke Risk in Children with Sickle Cell Disease - TCDi. https://www.phenxtoolkit.org/protocols/view/821002

PhenX Toolkit. (2026 February 26). Sustained and Selective Attention. https://www.phenxtoolkit.org/protocols/view/821201

PhenX Toolkit. (2026 February 26). Pain. https://www.phenxtoolkit.org/protocols/view/170401

PhenX Toolkit. (2026 February 26). History of Stroke - Ischemic Infarction and Hemorrhage. https://www.phenxtoolkit.org/protocols/view/130301

PhenX Toolkit. (2026 February 26). Executive Function. https://www.phenxtoolkit.org/protocols/view/131101

PhenX Toolkit. (2026 February 26). Executive Function - Child. https://www.phenxtoolkit.org/protocols/view/131102

PhenX Toolkit. (2026 February 26). Migraine - Adult. https://www.phenxtoolkit.org/protocols/view/130501

PhenX Toolkit. (2026 February 26). Migraine - Children. https://www.phenxtoolkit.org/protocols/view/130502

PhenX Toolkit. (2026 February 26). Verbal Memory - Adult. https://www.phenxtoolkit.org/protocols/view/130801

PhenX Toolkit. (2026 February 26). Verbal Memory - Child. https://www.phenxtoolkit.org/protocols/view/130802

PhenX Toolkit. (2026 February 26). Visual Memory - Adult. https://www.phenxtoolkit.org/protocols/view/130901

PhenX Toolkit. (2026 February 26). Visual Memory - Child. https://www.phenxtoolkit.org/protocols/view/130902

PhenX Toolkit. (2026 February 26). Working Memory - Adult. https://www.phenxtoolkit.org/protocols/view/131001

PhenX Toolkit. (2026 February 26). Working Memory - Child. https://www.phenxtoolkit.org/protocols/view/131002

PhenX Toolkit. (2026 February 26). Motor and Attentional Impulsivity (Immediate and Delayed Memory Task). https://www.phenxtoolkit.org/protocols/view/530602

PhenX Toolkit. (2026 February 26). Health Quality Index for Economic Evaluations - Child and Adolescent. https://www.phenxtoolkit.org/protocols/view/560402

PhenX Toolkit. (2026 February 26). Health Quality Index for Economic Evaluations - Adult. https://www.phenxtoolkit.org/protocols/view/560403

PhenX Toolkit. (2026 February 26). Impairment - Adolescent. https://www.phenxtoolkit.org/protocols/view/610101

PhenX Toolkit. (2026 February 26). Impairment - Adult. https://www.phenxtoolkit.org/protocols/view/610102

PhenX Toolkit. (2026 February 26). Service Utilization and Cost. https://www.phenxtoolkit.org/protocols/view/560702

PhenX Toolkit. (2026 February 26). Screening and Severity of Substance Use Problems - Adults - Alcohol - Past 12 Months. https://www.phenxtoolkit.org/protocols/view/510201

PhenX Toolkit. (2026 February 26). Screening and Severity of Substance Use Problems - Adolescents. https://www.phenxtoolkit.org/protocols/view/510202

PhenX Toolkit. (2026 February 26). Screening and Severity of Substance Use Problems - Adults - Alcohol - Lifetime. https://www.phenxtoolkit.org/protocols/view/510203

PhenX Toolkit. (2026 February 26). Screening and Severity of Substance Use Problems - Adults - Drugs. https://www.phenxtoolkit.org/protocols/view/510204

PhenX Toolkit. (2026 February 26). Alcohol - 30-Day Quantity and Frequency. https://www.phenxtoolkit.org/protocols/view/30301

PhenX Toolkit. (2026 February 26). Substances - 30-Day Frequency. https://www.phenxtoolkit.org/protocols/view/31302

PhenX Toolkit. (2026 February 26). Quality of Life Enjoyment and Satisfaction - Adult. https://www.phenxtoolkit.org/protocols/view/180302

PhenX Toolkit. (2026 February 26). Quality of Life Enjoyment and Satisfaction - Children. https://www.phenxtoolkit.org/protocols/view/180303

PhenX Toolkit. (2026 February 26). Short Form-McGill Pain Questionnaire-2 (SF-MPQ-2). https://www.phenxtoolkit.org/protocols/view/190901

PhenX Toolkit. (2026 February 26). Adolescent Pediatric Pain Tool (APPT). https://www.phenxtoolkit.org/protocols/view/190902

PhenX Toolkit. (2026 February 26). Physical, Social, and Mental Health Functioning (SF-36V2). https://www.phenxtoolkit.org/protocols/view/191201

PhenX Toolkit. (2026 February 26). Ethnicity and Race. https://www.phenxtoolkit.org/protocols/view/11901

PhenX Toolkit. (2026 February 26). Height - Knee Height. https://www.phenxtoolkit.org/protocols/view/20701

PhenX Toolkit. (2026 February 26). Pulse Oximetry (Rest). https://www.phenxtoolkit.org/protocols/view/91102

PhenX Toolkit. (2026 February 26). Hemoglobin Characterization. https://www.phenxtoolkit.org/protocols/view/830302

PhenX Toolkit. (2026 February 26). Complete Blood Count (CBC). https://www.phenxtoolkit.org/protocols/view/220501

PhenX Toolkit. (2026 February 26). Height - Self-Reported Height. https://www.phenxtoolkit.org/protocols/view/20707

PhenX Toolkit. (2026 February 26). Current Age. https://www.phenxtoolkit.org/protocols/view/10102

PhenX Toolkit. (2026 February 26). Weight - Measured Weight. https://www.phenxtoolkit.org/protocols/view/21503

PhenX Toolkit. (2026 February 26). Weight - Self-Reported Weight. https://www.phenxtoolkit.org/protocols/view/21504

PhenX Toolkit. (2026 February 26). Height - Recumbent Length. https://www.phenxtoolkit.org/protocols/view/20705

PhenX Toolkit. (2026 February 26). Height - Standing Height. https://www.phenxtoolkit.org/protocols/view/20706

PhenX Toolkit. (2026 February 26). Overactive Bladder Symptoms and Quality of Life. https://www.phenxtoolkit.org/protocols/view/880101

PhenX Toolkit. (2026 February 26). Testosterone Level - Bioassay. https://www.phenxtoolkit.org/protocols/view/880201

PhenX Toolkit. (2026 February 26). Priapism Impact. https://www.phenxtoolkit.org/protocols/view/850602

PhenX Toolkit. (2026 February 26). Perimenopausal Symptoms. https://www.phenxtoolkit.org/protocols/view/880401

PhenX Toolkit. (2026 February 26). Fertility and Quality of Life. https://www.phenxtoolkit.org/protocols/view/880501

PhenX Toolkit. (2026 February 26). Female Contraception Use and Preference in Sickle Cell Disease. https://www.phenxtoolkit.org/protocols/view/880601

PhenX Toolkit. (2026 February 26). Offspring and Fertility History. https://www.phenxtoolkit.org/protocols/view/880701

PhenX Toolkit. (2026 February 26). Sexual Function and Satisfaction - Female. https://www.phenxtoolkit.org/protocols/view/880801

PhenX Toolkit. (2026 February 26). Sexual Function and Satisfaction - Male. https://www.phenxtoolkit.org/protocols/view/880802

PhenX Toolkit. (2026 February 26). Hormone Therapy. https://www.phenxtoolkit.org/protocols/view/880901

PhenX Toolkit. (2026 February 26). Sickle Cell Disease Pain Associated with Menstruation. https://www.phenxtoolkit.org/protocols/view/881001

PhenX Toolkit. (2026 February 26). Sickle Cell Disease Pain Associated with Menstruation - Quality of Life. https://www.phenxtoolkit.org/protocols/view/881101

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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