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Essential Protocols

Total Protocols in My Toolkit: 95
	Ethnicity and Race U.S. Census Bureau, Census 2020, Questionnaire Remove
	Educational Attainment - Individual National Health and Nutrition Examination Survey (NHANES), Demographics Module, 2019-2020 Remove
	Current Marital Status Behavioral Risk Factor Surveillance System (BRFSS), Core Section 8: Demographics, 2018 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
	Broad Psychopathology - Adult The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) Check all Current Age Add to Toolkit Remove
	Broad Psychopathology - Child The Strengths and Difficulties Questionnaire (SDQ) Check all Current Age Add to Toolkit Remove
	Child-Reported Parental Education Attainment National Longitudinal Study on Adolescent Health (Add Health), 1995 Check all Current Age Add to Toolkit Remove
	Current Age National Health and Nutrition Examination Survey (NHANES), 2019-2020 Remove
	Annual Household Family Income and Number of People Supported All of Us Research Program, Participant Provided Information (PPI), 2017 and Hispanic Community Health Study / Study of Latinos (HCHS/SOL) Check all Current Age Household Roster-Relationships Add to Toolkit Remove
	Counts of Acute Bleeds in Hemophilia American Thrombosis and Hemostasis Network (ATHN) dataset Core Data Elements, Version 2.0 Check all Current Age Add to Toolkit Remove
	Factor IX Activity in Plasma Using the Chromogenic Substrate Assay Blanchette et al. Definitions in hemophilia: communication from the SSC of the ISTH. J Thromb Haemost, 2014 Check all Current Age Add to Toolkit Remove
	Factor IX Activity in Plasma Using the One-Stage Clotting Factor Assay Blanchette et al. Definitions in hemophilia: communication from the SSC of the ISTH. J Thromb Haemost, 2014 Check all Current Age Add to Toolkit Remove
	Factor VIII Activity in Plasma Using the Chromogenic Substrate Assay Blanchette et al. Definitions in hemophilia: communication from the SSC of the ISTH. J Thromb Haemost, 2014 Check all Current Age Add to Toolkit Remove
	Factor VIII Activity in Plasma Using the One-Stage Clotting Factor Assay Blanchette et al. Definitions in hemophilia: communication from the SSC of the ISTH. J Thromb Haemost, 2014 Check all Current Age Add to Toolkit Remove
	Determination of Factor IX Inhibitors: Bethesda Assay with Nijmegen Modification Using Chromogenic Substrate Assay Blanchette et al. Definitions in hemophilia: communication from the SSC of the ISTH. J Thromb Haemost, 2014 Check all Current Age Add to Toolkit Remove
	Determination of Factor IX Inhibitors: Bethesda Assay with or without Nijmegen Modification Using One-Stage Clotting Factor Assay Lippi, G., et al. Quality standards for sample collection in coagulation testing. Seminars in Thrombosis and Hemostasis, 2012 Check all Current Age Add to Toolkit Remove
	Determination of Factor VIII Inhibitors: Bethesda Assay with Nijmegen Modification Using Chromogenic Substrate Assay Blanchette et al. Definitions in hemophilia: communication from the SSC of the ISTH. J Thromb Haemost, 2014 Check all Current Age Add to Toolkit Remove
	Determination of Factor VIII Inhibitors: Bethesda Assay with Nijmegen Modification Using One-Stage Clotting Factor Assay Blanchette et al. Definitions in hemophilia: communication from the SSC of the ISTH. J Thromb Haemost, 2014 Check all Current Age Add to Toolkit Remove
	School Attendance - Child National Survey of Childrens Health (NSCH), 2016 Check all Current Age Add to Toolkit Remove
	School and Work Attendance - Adult Work Productivity and Activity Impairment Questionnaire (WPAI), General Health (WPAI:GH), V2.0 Check all Current Age Add to Toolkit Remove
	Disease-specific Health-related Quality of Life in Hemophilia Haem-A-QoL Check all Current Age Add to Toolkit Remove
	Hemophilia-specific Functional Ability - Child Pediatric Hemophilia Activities List (PedHAL) Check all Current Age Add to Toolkit Remove
	Hemophilia-specific Functional Ability - Adult Hemophilia Activities List (HAL) Check all Current Age Add to Toolkit Remove
	Individual Pharmacokinetic Study using One-stage Clotting Factor Assay - Standard Half-life Factor IX Products Lee et al., Scientific and Standardization Committee Communication: The Design and Analysis of Pharmacokinetic Studies of Coagulation Factors. ISTH, 2001. Check all Current Age Add to Toolkit Remove
	Individual Pharmacokinetic Study using One-stage Clotting Factor Assay - Extended Half-life Factor IX Products Adcock Funk et al., Quality standards for sample processing, transportation, and storage in hemostasis testing. Semin Thromb Hemost, 2012 Check all Current Age Add to Toolkit Remove
	Individual Pharmacokinetic Study Using Chromogenic Assay - Standard Half-life Factor IX Products Check all Current Age Add to Toolkit Remove
	Individual Pharmacokinetic Study Using Chromogenic Assay - Extended Half-life Factor IX Products Adcock Funk et al. Quality standards for sample processing, transportation, and storage in hemostasis testing. Semin Thromb Hemost, 2012 Check all Current Age Add to Toolkit Remove
	Population-based Pharmacokinetic Study Using One-stage Clotting Factor Assay - Standard Half-life Factor IX Products Iorio et al. Estimating and interpreting the pharmacokinetic profiles of individual patients with hemophilia A or B using a population pharmacokinetic approach: Communication from the SSC of the ISTH. J Thromb Haemost, 2017 Check all Current Age Add to Toolkit Remove
	Population-based Pharmacokinetic Study Using One-stage Clotting Factor Assay - Extended Half-life Factor IX Products Iorio et al. Estimating and interpreting the pharmacokinetic profiles of individual patients with hemophilia A or B using a population pharmacokinetic approach: Communication from the SSC of the ISTH. J Thromb Haemost, 2017 Check all Current Age Add to Toolkit Remove
	Population-based Pharmacokinetic Study Using Chromogenic Substrate Assay - Standard Half-life Factor IX Products Iorio et al. Estimating and interpreting the pharmacokinetic profiles of individual patients with hemophilia A or B using a population pharmacokinetic approach: Communication from the SSC of the ISTH. J Thromb Haemost, 2017 Check all Current Age Add to Toolkit Remove
	Population-based Pharmacokinetic Study Using Chromogenic Substrate Assay - Extended Half-life Factor IX Products Iorio et al. Estimating and interpreting the pharmacokinetic profiles of individual patients with hemophilia A or B using a population pharmacokinetic approach: Communication from the SSC of the ISTH. J Thromb Haemost, 2017 Check all Current Age Add to Toolkit Remove
	Individual Pharmacokinetic Study Using One-stage Clotting Factor Assay - Standard Half-life Factor VIII Products Lee et al. Scientific and Standardization Committee Communication: The Design and Analysis of Pharmacokinetic Studies of Coagulation Factors. ISTH, 2001 Check all Current Age Add to Toolkit Remove
	Individual Pharmacokinetic Study Using One-stage Clotting Factor Assay - Extended Half-life Factor VIII Products Adcock Funk et al. Quality standards for sample processing, transportation, and storage in hemostasis testing. Semin Thromb Hemost, 2012 Check all Current Age Add to Toolkit Remove
	Individual Pharmacokinetic Study Using Chromogenic Substrate Assay - Standard Half-life Factor VIII Products Lee et al. Scientific and Standardization Committee Communication: The Design and Analysis of Pharmacokinetic Studies of Coagulation Factors. ISTH, 2001 Check all Current Age Add to Toolkit Remove
	Individual Pharmacokinetic Study Using Chromogenic Substrate Assay - Extended Half-life Factor VIII Products Adcock Funk et al. Quality standards for sample processing, transportation, and storage in hemostasis testing. Semin Thromb Hemost, 2012 Check all Current Age Add to Toolkit Remove
	Population-based Pharmacokinetic Study Using One-stage Clotting Factor Assay - Standard Half-life Factor VIII Products Iorio et al. Estimating and interpreting the pharmacokinetic profiles of individual patients with hemophilia A or B using a population pharmacokinetic approach: Communication from the SSC of the ISTH. J Thromb Haemost, 2017 Check all Current Age Add to Toolkit Remove
	Population-based Pharmacokinetic Study Using One-stage Clotting Factor Assay - Extended Half-life Factor VIII Products Iorio et al. Estimating and interpreting the pharmacokinetic profiles of individual patients with hemophilia A or B using a population pharmacokinetic approach: Communication from the SSC of the ISTH. J Thromb Haemost, 2017 Check all Current Age Add to Toolkit Remove
	Population-based Pharmacokinetic Study Using Chromogenic Substrate Assay - Standard Half-life Factor VIII Products Iorio et al. Estimating and interpreting the pharmacokinetic profiles of individual patients with hemophilia A or B using a population pharmacokinetic approach: Communication from the SSC of the ISTH. J Thromb Haemost, 2017 Check all Current Age Add to Toolkit Remove
	Population-based Pharmacokinetic Study Using Chromogenic Substrate Assay - Extended Half-life Factor VIII Products Iorio et al. Estimating and interpreting the pharmacokinetic profiles of individual patients with hemophilia A or B using a population pharmacokinetic approach: Communication from the SSC of the ISTH. J Thromb Haemost, 2017 Check all Current Age Add to Toolkit Remove
	Emicizumab Therapy: Determination of Factor VIII Inhibitors Using the Bethesda Assay with Nijmegen Modification: Chromogenic Substrate Assay with Bovine Reagents Medical and Scientific Advisory Committee (MASAC) of the National Hemophilia Foundation (NHF), 2017 Check all Current Age Add to Toolkit Remove
	Emicizumab Therapy: Individual Pharmacokinetic Study of Standard Half-life Factor VIII Products: Chromogenic Substrate Assay with Bovine Reagents Medical and Scientific Advisory Committee (MASAC) of the National Hemophilia Foundation (NHF), 2017 Check all Current Age Add to Toolkit Remove
	Emicizumab Therapy: Individual Pharmacokinetic Study of Extended Half-life Factor VIII Products: Chromogenic Substrate Assay with Bovine Reagents Medical and Scientific Advisory Committee (MASAC) of the National Hemophilia Foundation (NHF), 2017 Check all Current Age Add to Toolkit Remove
	Emicizumab Therapy: Population-based Pharmacokinetic Study of Standard Half-life Factor VIII Products: Chromogenic Substrate Assay with Bovine Reagents Medical and Scientific Advisory Committee (MASAC) of the National Hemophilia Foundation (NHF), 2017 Check all Current Age Add to Toolkit Remove
	Emicizumab Therapy: Population-based Pharmacokinetic Study of Extended Half-life Factor VIII Products: Chromogenic Substrate Assay with Bovine Reagents Medical and Scientific Advisory Committee (MASAC) of the National Hemophilia Foundation (NHF), 2017 Check all Current Age Add to Toolkit Remove
	Adherence to Prophylactic Clotting Factor Treatment Regimens in Hemophilia Validated Hemophilia Regimen Treatment Adherence Scale - Prophylaxis (VERITAS-Pro(TM)) Check all Current Age Add to Toolkit Remove
	Adherence to Episodic Clotting Factor Treatment Regimens in Hemophilia Validated Hemophilia Regimen Treatment Adherence Scale - On-Demand (VERITAS-PRN(TM)) Check all Current Age Add to Toolkit Remove
	Hemophilia Joint Health Score Hemophilia Joint Health Score (HJHS), 2.1 Check all Current Age Add to Toolkit Remove
	Bilirubin Level National Health and Nutrition Examination Survey Questionnaire (NHANES), Laboratory Procedures Manual, 2011 Check all Current Age Ethnicity and Race Add to Toolkit Remove
	Body Temperature - Tympanic Thermometers Davie, A., et al. Best practice in the measureement of body temperature. NURS STAND, 2010 Check all Current Age Add to Toolkit Remove
	Body Temperature - Oral Thermometers Davie, A., et al. Best practice in the measureement of body temperature. NURS STAND, 2010 Check all Current Age Add to Toolkit Remove
	Chest X-ray ACR-SPR, Practice Parameter for the Performance of Chest Radiography, 2014 Check all Current Age Add to Toolkit Remove
	Haptoglobin Level National Health and Nutrition Examination Survey Questionnaire (NHANES), Laboratory Procedures Manual, 2011 Check all Current Age Ethnicity and Race Add to Toolkit Remove
	Lactate Dehydrogenase Level National Health and Nutrition Examination Survey Questionnaire (NHANES), Laboratory Procedures Manual, 2011 Check all Current Age Ethnicity and Race Add to Toolkit Remove
	Lung Function - Diffusion Capacity MacIntyre, N., et al. Standardization of the single-breath determination of carbon monoxide uptake in the lung. EUR RESPIR J, 2005 Check all 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
	Lung Function - Lung Volume Wanger, J. et al. Standardization of the measurement of lung volumes. EUR RESPIR J, 2005 Check all 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
	N-terminal Pro-brain Natriuretic Peptide (NT-proBNP) National Health and Nutrition Examination Survey Questionnaire (NHANES), Laboratory Procedures Manual, 2011 Check all Current Age Ethnicity and Race Add to Toolkit Remove
	Reticulocyte Count National Health and Nutrition Examination Survey Questionnaire (NHANES), Laboratory Procedures Manual, 2011 Check all Current Age Ethnicity and Race Add to Toolkit Remove
	Serum or Plasma Ferritin National Health and Nutrition Examination Survey Questionnaire (NHANES), Laboratory Procedures Manual, 2009-2010 Check all Current Age Ethnicity and Race Add to Toolkit Remove
	Abdominal Aortic Aneurysm San Diego Population Study (SDPS) & The Multicentre Aneurysm Screening Study (MASS), 2002 Check all Current Age Add to Toolkit Remove
	Arterial Blood Gas (ABG) Davis, M.D., et al. AARC clinical practice guideline: Blood gas analysis and hemoximetry. Respir Care, 2013 Remove
	Blood Pressure (Adult/Primary) Coronary Artery Risk Development in Young Adults (CARDIA), Y20 CARDIA VII & Framingham Heart Study (FHS), Generation 3 Check all Current Age Ethnicity and Race Add to Toolkit Remove
	Chest Computed Tomography (CT) Genetic Epidemiology of COPD Clinical Center Manual of Procedures, 2014 Check all Current Age Add to Toolkit Remove
	Deep Venous Thrombosis Womens Health Initiative (WHI) & Cardiovascular Health Study (CHS) Check all Current Age Add to Toolkit Remove
	Exercise Capacity/Six-Minute Walk Test Six-Minute Walk Test (6MWT) Check all Current Age Add to Toolkit Remove
	Heart Valve Function Cardiovascular Health Study (CHS), Baseline Medical History Questionnaire & Framingham Heart Study (FHS) Check all Current Age Add to Toolkit Remove
	History of Stroke - Ischemic Infarction and Hemorrhage Jackson Heart Study (JHS) Check all Current Age Ethnicity and Race Add to Toolkit Remove
	Peak Expiratory Flow Rate (PEFR) Miller, M. R., et al, Standardization of spirometry. Series “ATS/ERS task force: Standardization of lung function testing.”, EUR RESPIR J, 2005 Check all Current Age Add to Toolkit Remove
	Personal History of Kidney Failure Strong Heart Study, Phase IV-Family Study, Medical History Form Check all Blood Pressure (Adult/Primary) Current Age Personal History of Type I and Type II Diabetes Add to Toolkit Remove
	Peripheral Arterial Disease Womens Health Initiative (WHI), ACC/AHA Task Force on Practice Guidelines, & Hispanic Community Health Study (HCHS) Check all Current Age Ethnicity and Race Add to Toolkit Remove
	Pulmonary Embolism Womens Health Initiative (WHI) & Cardiovascular Health Study (CHS) Check all Current Age Add to Toolkit Remove
	Respiratory Rate - Child Wallis, L. A., Healy, et al, Age related reference ranges for respiration rate and heart rate from 4 to 16 years, ARCH DIS CHILD, 2005 Check all Current Age Add to Toolkit Remove
	Respiratory Rate - Adult Potter, P. A., et al. Fundamentals of Nursing, 1985 Check all Current Age Add to Toolkit Remove
	Respiratory Rate - Infant Fleming, S, et al. Normal ranges of heart rate and respiratory rate in children from birth to 18 years of age: A systemic review of observational studies. Lancer, 2011 Check all Current Age Add to Toolkit Remove
	Sleep Apnea - Adult Berlin Questionnaire Check all Current Age Height - Knee Height Height - Recumbent Length Height - Self-Reported Height Height - Standing Height Weight - Measured Weight Weight - Self-Reported Weight Add to Toolkit Remove
	Sleep Apnea - Child The Pediatric Sleep Questionnaire (PSQ), Version 070424 Check all Current Age Height - Knee Height Height - Recumbent Length Height - Self-Reported Height Height - Standing Height Weight - Measured Weight Weight - Self-Reported Weight Add to Toolkit Remove
	Spirometry - Adult Miller, M. R., et al, Standardization of spirometry. Series “ATS/ERS task force: Standardization of lung function testing.”, EUR RESPIR J, 2005 Check all Current Age Add to Toolkit Remove
	Spirometry - Child Beydon, N., et al, An official American Thoracic Society/European Respiratory Society statement: Pulmonary function testing in preschool children, AM J RESP CRIT CARE, 2007 Check all Current Age Add to Toolkit Remove
	Serum Creatinine - Assay National Health and Nutrition Examination Survey (NHANES), Laboratory Procedures Manual, 2007 Check all Current Age Ethnicity and Race Add to Toolkit Remove
	Urinary Microalbumin - Assay National Health and Nutrition Examination Survey (NHANES), Laboratory Procedures Manual, 2007 Check all Current Age Add to Toolkit Remove
	Urinary Creatinine - Assay National Health and Nutrition Examination Survey (NHANES), Laboratory Procedures Manual, 2007 Check all Current Age Add to Toolkit Remove
	Aspartate Aminotransferase Level National Health and Nutrition Examination Survey Questionnaire (NHANES), Laboratory Procedures Manual, 2011 Check all Current Age Ethnicity and Race Add to Toolkit Remove
	Prothrombin Time Prothrombin Time (PT), CPT 85610 Check all Current Age Medication Inventory Add to Toolkit Remove
	Left Ventricular Global Longitudinal Strain by Speckle Tracking Echocardiography Voigt, et al. Definitions for a common standard for 2D speckle tracking echocardiography: Consensus document of the EACVI/ASE/Industry Task Force to standardize deformation imaging. European Heart Journal - Cardiovascular Imaging, 16(1), 1-11. Check all Current Age Add to Toolkit Remove
	Psychosocial Assessment of Candidates for Transplantation (PACT) Psychosocial Assessment of Candidates for Transplantation (PACT) Remove
	Sickle Cell Disease Transplant Conditioning Regimen Cure Sickle Cell Initiative (CureSCi) Transplant Conditioning Case Report Form (CRF) Check all Current Age Add to Toolkit Remove
	Sickle Cell Disease Stem Cell Source and Cell Manipulation Cure Sickle Cell Initiative (CureSCi) Drug Product Case Report Form and Center for International Blood and Marrow Transplant Research (CIBMTR) Form 2400 (R8.0) Pre-Transplant Essential Data, 2021 Remove
	Recurrent Priapism Center for International Blood and Marrow Transplant (CIBMTR), Form 2030 (R3.0) Sickle Cell Pre-HSCT Data, 2021 Remove
	White Cell Chimerism and Graft Failure Center for International Blood and Marrow Transplant Research (CIBMTR), Form 2450 (R5.0) Post-Transplant Essential Data, 2020 Remove
	Graft versus Host Disease Center for International Blood and Marrow Transplant Research (CIBMTR),Form 2450 (R5.0) Post-Transplant Essential Data, 2021 Remove
	Pre-transfusion Antibody Testing Sickle Cell Disease and Cardiovascular Risk—Red Cell Exchange Trial (SCD CARRE) Remove
	Transfusion Reaction Reporting The Sickle Cell Disease and Cardiovascular Risk—Red Cell Exchange Trial (SCD CARRE) Remove This protocol is retired.
	Thyroid Stimulating Hormone (hTSH) in Serum Thyroid Stimulating Hormone (TSH), CPT 84443 Remove
	Determination of Liver Iron Concentration by R2* Garbowski, M. W., Carpenter, J.-P., Smith, G., Roughton, M., Alam, M. H., He, T., Pennell, D. J., & Porter, J. B. (2014). Biopsy-based calibration of T2* magnetic resonance for estimation of liver iron concentration and comparison with R2 Ferriscan. Journal of Cardiovascular Magnetic Resonance, 16, 40. Remove
	Determination of Liver Iron Concentration by Ferriscan St. Pierre, T. G., et al. Single spin-echo proton transverse relaxometry of iron-loaded liver. NMR Biomedicine, 2004 Remove
Total Protocols in My Toolkit: 95

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

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

PhenX Toolkit. (2026 February 24). Ethnicity and Race. https://www.phenxtoolkit.org/protocols/view/11901

PhenX Toolkit. (2026 February 24). Educational Attainment - Individual. https://www.phenxtoolkit.org/protocols/view/11002

PhenX Toolkit. (2026 February 24). Current Marital Status. https://www.phenxtoolkit.org/protocols/view/10903

PhenX Toolkit. (2026 February 24). Impairment - Adolescent. https://www.phenxtoolkit.org/protocols/view/610101

PhenX Toolkit. (2026 February 24). Impairment - Adult. https://www.phenxtoolkit.org/protocols/view/610102

PhenX Toolkit. (2026 February 24). Broad Psychopathology - Adult. https://www.phenxtoolkit.org/protocols/view/610201

PhenX Toolkit. (2026 February 24). Broad Psychopathology - Child. https://www.phenxtoolkit.org/protocols/view/610202

PhenX Toolkit. (2026 February 24). Child-Reported Parental Education Attainment. https://www.phenxtoolkit.org/protocols/view/210201

PhenX Toolkit. (2026 February 24). Current Age. https://www.phenxtoolkit.org/protocols/view/10102

PhenX Toolkit. (2026 February 24). Annual Household Family Income and Number of People Supported. https://www.phenxtoolkit.org/protocols/view/12001

PhenX Toolkit. (2026 February 24). Counts of Acute Bleeds in Hemophilia. https://www.phenxtoolkit.org/protocols/view/910101

PhenX Toolkit. (2026 February 24). Factor IX Activity in Plasma Using the Chromogenic Substrate Assay. https://www.phenxtoolkit.org/protocols/view/910201

PhenX Toolkit. (2026 February 24). Factor IX Activity in Plasma Using the One-Stage Clotting Factor Assay. https://www.phenxtoolkit.org/protocols/view/910202

PhenX Toolkit. (2026 February 24). Factor VIII Activity in Plasma Using the Chromogenic Substrate Assay. https://www.phenxtoolkit.org/protocols/view/910301

PhenX Toolkit. (2026 February 24). Factor VIII Activity in Plasma Using the One-Stage Clotting Factor Assay. https://www.phenxtoolkit.org/protocols/view/910302

PhenX Toolkit. (2026 February 24). Determination of Factor IX Inhibitors: Bethesda Assay with Nijmegen Modification Using Chromogenic Substrate Assay. https://www.phenxtoolkit.org/protocols/view/910401

PhenX Toolkit. (2026 February 24). Determination of Factor IX Inhibitors: Bethesda Assay with or without Nijmegen Modification Using One-Stage Clotting Factor Assay. https://www.phenxtoolkit.org/protocols/view/910402

PhenX Toolkit. (2026 February 24). Determination of Factor VIII Inhibitors: Bethesda Assay with Nijmegen Modification Using Chromogenic Substrate Assay. https://www.phenxtoolkit.org/protocols/view/910501

PhenX Toolkit. (2026 February 24). Determination of Factor VIII Inhibitors: Bethesda Assay with Nijmegen Modification Using One-Stage Clotting Factor Assay. https://www.phenxtoolkit.org/protocols/view/910502

PhenX Toolkit. (2026 February 24). School Attendance - Child. https://www.phenxtoolkit.org/protocols/view/910601

PhenX Toolkit. (2026 February 24). School and Work Attendance - Adult. https://www.phenxtoolkit.org/protocols/view/910602

PhenX Toolkit. (2026 February 24). Disease-specific Health-related Quality of Life in Hemophilia. https://www.phenxtoolkit.org/protocols/view/910701

PhenX Toolkit. (2026 February 24). Hemophilia-specific Functional Ability - Child. https://www.phenxtoolkit.org/protocols/view/910801

PhenX Toolkit. (2026 February 24). Hemophilia-specific Functional Ability - Adult. https://www.phenxtoolkit.org/protocols/view/910802

PhenX Toolkit. (2026 February 24). Individual Pharmacokinetic Study using One-stage Clotting Factor Assay - Standard Half-life Factor IX Products. https://www.phenxtoolkit.org/protocols/view/910901

PhenX Toolkit. (2026 February 24). Individual Pharmacokinetic Study using One-stage Clotting Factor Assay - Extended Half-life Factor IX Products. https://www.phenxtoolkit.org/protocols/view/910902

PhenX Toolkit. (2026 February 24). Individual Pharmacokinetic Study Using Chromogenic Assay - Standard Half-life Factor IX Products. https://www.phenxtoolkit.org/protocols/view/910903

PhenX Toolkit. (2026 February 24). Individual Pharmacokinetic Study Using Chromogenic Assay - Extended Half-life Factor IX Products. https://www.phenxtoolkit.org/protocols/view/910904

PhenX Toolkit. (2026 February 24). Population-based Pharmacokinetic Study Using One-stage Clotting Factor Assay - Standard Half-life Factor IX Products. https://www.phenxtoolkit.org/protocols/view/911001

PhenX Toolkit. (2026 February 24). Population-based Pharmacokinetic Study Using One-stage Clotting Factor Assay - Extended Half-life Factor IX Products. https://www.phenxtoolkit.org/protocols/view/911002

PhenX Toolkit. (2026 February 24). Population-based Pharmacokinetic Study Using Chromogenic Substrate Assay - Standard Half-life Factor IX Products. https://www.phenxtoolkit.org/protocols/view/911003

PhenX Toolkit. (2026 February 24). Population-based Pharmacokinetic Study Using Chromogenic Substrate Assay - Extended Half-life Factor IX Products. https://www.phenxtoolkit.org/protocols/view/911004

PhenX Toolkit. (2026 February 24). Individual Pharmacokinetic Study Using One-stage Clotting Factor Assay - Standard Half-life Factor VIII Products. https://www.phenxtoolkit.org/protocols/view/911101

PhenX Toolkit. (2026 February 24). Individual Pharmacokinetic Study Using One-stage Clotting Factor Assay - Extended Half-life Factor VIII Products. https://www.phenxtoolkit.org/protocols/view/911102

PhenX Toolkit. (2026 February 24). Individual Pharmacokinetic Study Using Chromogenic Substrate Assay - Standard Half-life Factor VIII Products. https://www.phenxtoolkit.org/protocols/view/911103

PhenX Toolkit. (2026 February 24). Individual Pharmacokinetic Study Using Chromogenic Substrate Assay - Extended Half-life Factor VIII Products. https://www.phenxtoolkit.org/protocols/view/911104

PhenX Toolkit. (2026 February 24). Population-based Pharmacokinetic Study Using One-stage Clotting Factor Assay - Standard Half-life Factor VIII Products. https://www.phenxtoolkit.org/protocols/view/911201

PhenX Toolkit. (2026 February 24). Population-based Pharmacokinetic Study Using One-stage Clotting Factor Assay - Extended Half-life Factor VIII Products. https://www.phenxtoolkit.org/protocols/view/911202

PhenX Toolkit. (2026 February 24). Population-based Pharmacokinetic Study Using Chromogenic Substrate Assay - Standard Half-life Factor VIII Products. https://www.phenxtoolkit.org/protocols/view/911203

PhenX Toolkit. (2026 February 24). Population-based Pharmacokinetic Study Using Chromogenic Substrate Assay - Extended Half-life Factor VIII Products. https://www.phenxtoolkit.org/protocols/view/911204

PhenX Toolkit. (2026 February 24). Emicizumab Therapy: Determination of Factor VIII Inhibitors Using the Bethesda Assay with Nijmegen Modification: Chromogenic Substrate Assay with Bovine Reagents. https://www.phenxtoolkit.org/protocols/view/911301

PhenX Toolkit. (2026 February 24). Emicizumab Therapy: Individual Pharmacokinetic Study of Standard Half-life Factor VIII Products: Chromogenic Substrate Assay with Bovine Reagents. https://www.phenxtoolkit.org/protocols/view/911401

PhenX Toolkit. (2026 February 24). Emicizumab Therapy: Individual Pharmacokinetic Study of Extended Half-life Factor VIII Products: Chromogenic Substrate Assay with Bovine Reagents. https://www.phenxtoolkit.org/protocols/view/911402

PhenX Toolkit. (2026 February 24). Emicizumab Therapy: Population-based Pharmacokinetic Study of Standard Half-life Factor VIII Products: Chromogenic Substrate Assay with Bovine Reagents. https://www.phenxtoolkit.org/protocols/view/911501

PhenX Toolkit. (2026 February 24). Emicizumab Therapy: Population-based Pharmacokinetic Study of Extended Half-life Factor VIII Products: Chromogenic Substrate Assay with Bovine Reagents. https://www.phenxtoolkit.org/protocols/view/911502

PhenX Toolkit. (2026 February 24). Adherence to Prophylactic Clotting Factor Treatment Regimens in Hemophilia. https://www.phenxtoolkit.org/protocols/view/911601

PhenX Toolkit. (2026 February 24). Adherence to Episodic Clotting Factor Treatment Regimens in Hemophilia. https://www.phenxtoolkit.org/protocols/view/911602

PhenX Toolkit. (2026 February 24). Hemophilia Joint Health Score. https://www.phenxtoolkit.org/protocols/view/911701

PhenX Toolkit. (2026 February 24). Bilirubin Level. https://www.phenxtoolkit.org/protocols/view/810901

PhenX Toolkit. (2026 February 24). Body Temperature - Tympanic Thermometers. https://www.phenxtoolkit.org/protocols/view/810101

PhenX Toolkit. (2026 February 24). Body Temperature - Oral Thermometers. https://www.phenxtoolkit.org/protocols/view/810102

PhenX Toolkit. (2026 February 24). Chest X-ray. https://www.phenxtoolkit.org/protocols/view/810201

PhenX Toolkit. (2026 February 24). Haptoglobin Level. https://www.phenxtoolkit.org/protocols/view/810801

PhenX Toolkit. (2026 February 24). Lactate Dehydrogenase Level. https://www.phenxtoolkit.org/protocols/view/811001

PhenX Toolkit. (2026 February 24). Lung Function - Diffusion Capacity. https://www.phenxtoolkit.org/protocols/view/810301

PhenX Toolkit. (2026 February 24). Lung Function - Lung Volume. https://www.phenxtoolkit.org/protocols/view/810401

PhenX Toolkit. (2026 February 24). N-terminal Pro-brain Natriuretic Peptide (NT-proBNP). https://www.phenxtoolkit.org/protocols/view/810501

PhenX Toolkit. (2026 February 24). Reticulocyte Count. https://www.phenxtoolkit.org/protocols/view/810601

PhenX Toolkit. (2026 February 24). Serum or Plasma Ferritin. https://www.phenxtoolkit.org/protocols/view/811301

PhenX Toolkit. (2026 February 24). Abdominal Aortic Aneurysm. https://www.phenxtoolkit.org/protocols/view/41001

PhenX Toolkit. (2026 February 24). Arterial Blood Gas (ABG). https://www.phenxtoolkit.org/protocols/view/90202

PhenX Toolkit. (2026 February 24). Blood Pressure (Adult/Primary). https://www.phenxtoolkit.org/protocols/view/40301

PhenX Toolkit. (2026 February 24). Chest Computed Tomography (CT). https://www.phenxtoolkit.org/protocols/view/90402

PhenX Toolkit. (2026 February 24). Deep Venous Thrombosis. https://www.phenxtoolkit.org/protocols/view/41201

PhenX Toolkit. (2026 February 24). Exercise Capacity/Six-Minute Walk Test. https://www.phenxtoolkit.org/protocols/view/90602

PhenX Toolkit. (2026 February 24). Heart Valve Function. https://www.phenxtoolkit.org/protocols/view/40501

PhenX Toolkit. (2026 February 24). History of Stroke - Ischemic Infarction and Hemorrhage. https://www.phenxtoolkit.org/protocols/view/130301

PhenX Toolkit. (2026 February 24). Peak Expiratory Flow Rate (PEFR). https://www.phenxtoolkit.org/protocols/view/90801

PhenX Toolkit. (2026 February 24). Personal History of Kidney Failure. https://www.phenxtoolkit.org/protocols/view/140601

PhenX Toolkit. (2026 February 24). Peripheral Arterial Disease. https://www.phenxtoolkit.org/protocols/view/40901

PhenX Toolkit. (2026 February 24). Pulmonary Embolism. https://www.phenxtoolkit.org/protocols/view/41301

PhenX Toolkit. (2026 February 24). Respiratory Rate - Child. https://www.phenxtoolkit.org/protocols/view/91402

PhenX Toolkit. (2026 February 24). Respiratory Rate - Adult. https://www.phenxtoolkit.org/protocols/view/91403

PhenX Toolkit. (2026 February 24). Respiratory Rate - Infant. https://www.phenxtoolkit.org/protocols/view/91404

PhenX Toolkit. (2026 February 24). Sleep Apnea - Adult. https://www.phenxtoolkit.org/protocols/view/91501

PhenX Toolkit. (2026 February 24). Sleep Apnea - Child. https://www.phenxtoolkit.org/protocols/view/91502

PhenX Toolkit. (2026 February 24). Spirometry - Adult. https://www.phenxtoolkit.org/protocols/view/91601

PhenX Toolkit. (2026 February 24). Spirometry - Child. https://www.phenxtoolkit.org/protocols/view/91602

PhenX Toolkit. (2026 February 24). Serum Creatinine - Assay. https://www.phenxtoolkit.org/protocols/view/141401

PhenX Toolkit. (2026 February 24). Urinary Microalbumin - Assay. https://www.phenxtoolkit.org/protocols/view/141501

PhenX Toolkit. (2026 February 24). Urinary Creatinine - Assay. https://www.phenxtoolkit.org/protocols/view/141601

PhenX Toolkit. (2026 February 24). Aspartate Aminotransferase Level. https://www.phenxtoolkit.org/protocols/view/811201

PhenX Toolkit. (2026 February 24). Prothrombin Time. https://www.phenxtoolkit.org/protocols/view/850101

PhenX Toolkit. (2026 February 24). Left Ventricular Global Longitudinal Strain by Speckle Tracking Echocardiography. https://www.phenxtoolkit.org/protocols/view/850201

PhenX Toolkit. (2026 February 24). Psychosocial Assessment of Candidates for Transplantation (PACT). https://www.phenxtoolkit.org/protocols/view/850301

PhenX Toolkit. (2026 February 24). Sickle Cell Disease Transplant Conditioning Regimen. https://www.phenxtoolkit.org/protocols/view/850401

PhenX Toolkit. (2026 February 24). Sickle Cell Disease Stem Cell Source and Cell Manipulation. https://www.phenxtoolkit.org/protocols/view/850501

PhenX Toolkit. (2026 February 24). Recurrent Priapism. https://www.phenxtoolkit.org/protocols/view/850601

PhenX Toolkit. (2026 February 24). White Cell Chimerism and Graft Failure. https://www.phenxtoolkit.org/protocols/view/850701

PhenX Toolkit. (2026 February 24). Graft versus Host Disease. https://www.phenxtoolkit.org/protocols/view/850801

PhenX Toolkit. (2026 February 24). Pre-transfusion Antibody Testing. https://www.phenxtoolkit.org/protocols/view/850901

PhenX Toolkit. (2026 February 24). Transfusion Reaction Reporting. https://www.phenxtoolkit.org/protocols/view/851001

PhenX Toolkit. (2026 February 24). Thyroid Stimulating Hormone (hTSH) in Serum. https://www.phenxtoolkit.org/protocols/view/851101

PhenX Toolkit. (2026 February 24). Determination of Liver Iron Concentration by R2*. https://www.phenxtoolkit.org/protocols/view/851201

PhenX Toolkit. (2026 February 24). Determination of Liver Iron Concentration by Ferriscan. https://www.phenxtoolkit.org/protocols/view/851202

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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