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DCW = Data Collection Worksheet

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Essential Protocols

Total Protocols in My Toolkit: 52
	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
	Air Quality Index Environmental Protection Agency (EPA), Air Quality Index (AQI) Check all Current Address Add to Toolkit Remove
	Concentrated Poverty American Community Survey (ACS), 5-year estimates, Concentrated Poverty, 2009-2018 Check all Current Address Add to Toolkit Remove
	Educational Attainment - Community American Community Survey (ACS), 5-year estimates, Educational Attainment, 2013-2017 Check all Current Address Residential History Add to Toolkit Remove
	Environmental Justice Environmental Protection Agency (EPA), Environmental Justice Screening and Mapping Tool (EJSCREEN) Check all Current Address Add to Toolkit Remove
	Food Swamp Traditional Retail Food Environment Index (RFEI) Check all Current Address Add to Toolkit Remove
	Percent Unionized for Non-Agricultural Labor Force Current Population Survey, Labor Force Items Remove
	Race/Ethnic Residential Segregation - U.S. Census U.S. Census Bureau, Census, 1990, 2000, 2010 Check all Current Address Residential History Add to Toolkit Remove
	Race/Ethnic Residential Segregation - American Community Survey American Community Survey (ACS), 5-year estimates Check all Current Address Residential History Add to Toolkit Remove
	Race/Ethnic Residential Segregation - Separation (S) Index, Unbiased American Community Survey (ACS), 5-year estimates Remove
	Social Vulnerability Social Vulnerability Index (SVI) Remove
	Residential Concentrations of Income Index of Concentration at the Extremes (ICE) Check all Current Address Residential History Add to Toolkit Remove
	Minimum Wage U.S. Department of Labor, State Minimum Wage Laws, 2022 Remove
	Neighborhood Walking and Biking Environment Microscale Audit of Pedestrian Streetscapes (MAPS-Mini) Check all Annual Household Family Income and Number of People Supported Current Address Current Age Ethnicity and Race Add to Toolkit Remove
	Water Access and Sanitation American Housing Survey (AHS), 2019 Check all Current Address Household Roster-Relationships Add to Toolkit Remove
Total Protocols in My Toolkit: 52

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. (2025 December 05). Counts of Acute Bleeds in Hemophilia. https://www.phenxtoolkit.org/protocols/view/910101

PhenX Toolkit. (2025 December 05). Factor IX Activity in Plasma Using the Chromogenic Substrate Assay. https://www.phenxtoolkit.org/protocols/view/910201

PhenX Toolkit. (2025 December 05). Factor IX Activity in Plasma Using the One-Stage Clotting Factor Assay. https://www.phenxtoolkit.org/protocols/view/910202

PhenX Toolkit. (2025 December 05). Factor VIII Activity in Plasma Using the Chromogenic Substrate Assay. https://www.phenxtoolkit.org/protocols/view/910301

PhenX Toolkit. (2025 December 05). Factor VIII Activity in Plasma Using the One-Stage Clotting Factor Assay. https://www.phenxtoolkit.org/protocols/view/910302

PhenX Toolkit. (2025 December 05). Determination of Factor IX Inhibitors: Bethesda Assay with Nijmegen Modification Using Chromogenic Substrate Assay. https://www.phenxtoolkit.org/protocols/view/910401

PhenX Toolkit. (2025 December 05). 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. (2025 December 05). Determination of Factor VIII Inhibitors: Bethesda Assay with Nijmegen Modification Using Chromogenic Substrate Assay. https://www.phenxtoolkit.org/protocols/view/910501

PhenX Toolkit. (2025 December 05). 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. (2025 December 05). School Attendance - Child. https://www.phenxtoolkit.org/protocols/view/910601

PhenX Toolkit. (2025 December 05). School and Work Attendance - Adult. https://www.phenxtoolkit.org/protocols/view/910602

PhenX Toolkit. (2025 December 05). Disease-specific Health-related Quality of Life in Hemophilia. https://www.phenxtoolkit.org/protocols/view/910701

PhenX Toolkit. (2025 December 05). Hemophilia-specific Functional Ability - Child. https://www.phenxtoolkit.org/protocols/view/910801

PhenX Toolkit. (2025 December 05). Hemophilia-specific Functional Ability - Adult. https://www.phenxtoolkit.org/protocols/view/910802

PhenX Toolkit. (2025 December 05). Individual Pharmacokinetic Study using One-stage Clotting Factor Assay - Standard Half-life Factor IX Products. https://www.phenxtoolkit.org/protocols/view/910901

PhenX Toolkit. (2025 December 05). Individual Pharmacokinetic Study using One-stage Clotting Factor Assay - Extended Half-life Factor IX Products. https://www.phenxtoolkit.org/protocols/view/910902

PhenX Toolkit. (2025 December 05). Individual Pharmacokinetic Study Using Chromogenic Assay - Standard Half-life Factor IX Products. https://www.phenxtoolkit.org/protocols/view/910903

PhenX Toolkit. (2025 December 05). Individual Pharmacokinetic Study Using Chromogenic Assay - Extended Half-life Factor IX Products. https://www.phenxtoolkit.org/protocols/view/910904

PhenX Toolkit. (2025 December 05). 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. (2025 December 05). 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. (2025 December 05). Population-based Pharmacokinetic Study Using Chromogenic Substrate Assay - Standard Half-life Factor IX Products. https://www.phenxtoolkit.org/protocols/view/911003

PhenX Toolkit. (2025 December 05). Population-based Pharmacokinetic Study Using Chromogenic Substrate Assay - Extended Half-life Factor IX Products. https://www.phenxtoolkit.org/protocols/view/911004

PhenX Toolkit. (2025 December 05). Individual Pharmacokinetic Study Using One-stage Clotting Factor Assay - Standard Half-life Factor VIII Products. https://www.phenxtoolkit.org/protocols/view/911101

PhenX Toolkit. (2025 December 05). Individual Pharmacokinetic Study Using One-stage Clotting Factor Assay - Extended Half-life Factor VIII Products. https://www.phenxtoolkit.org/protocols/view/911102

PhenX Toolkit. (2025 December 05). Individual Pharmacokinetic Study Using Chromogenic Substrate Assay - Standard Half-life Factor VIII Products. https://www.phenxtoolkit.org/protocols/view/911103

PhenX Toolkit. (2025 December 05). Individual Pharmacokinetic Study Using Chromogenic Substrate Assay - Extended Half-life Factor VIII Products. https://www.phenxtoolkit.org/protocols/view/911104

PhenX Toolkit. (2025 December 05). 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. (2025 December 05). 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. (2025 December 05). Population-based Pharmacokinetic Study Using Chromogenic Substrate Assay - Standard Half-life Factor VIII Products. https://www.phenxtoolkit.org/protocols/view/911203

PhenX Toolkit. (2025 December 05). Population-based Pharmacokinetic Study Using Chromogenic Substrate Assay - Extended Half-life Factor VIII Products. https://www.phenxtoolkit.org/protocols/view/911204

PhenX Toolkit. (2025 December 05). 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. (2025 December 05). 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. (2025 December 05). 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. (2025 December 05). 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. (2025 December 05). 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. (2025 December 05). Adherence to Prophylactic Clotting Factor Treatment Regimens in Hemophilia. https://www.phenxtoolkit.org/protocols/view/911601

PhenX Toolkit. (2025 December 05). Adherence to Episodic Clotting Factor Treatment Regimens in Hemophilia. https://www.phenxtoolkit.org/protocols/view/911602

PhenX Toolkit. (2025 December 05). Hemophilia Joint Health Score. https://www.phenxtoolkit.org/protocols/view/911701

PhenX Toolkit. (2025 December 05). Air Quality Index. https://www.phenxtoolkit.org/protocols/view/290101

PhenX Toolkit. (2025 December 05). Concentrated Poverty. https://www.phenxtoolkit.org/protocols/view/290201

PhenX Toolkit. (2025 December 05). Educational Attainment - Community. https://www.phenxtoolkit.org/protocols/view/290301

PhenX Toolkit. (2025 December 05). Environmental Justice. https://www.phenxtoolkit.org/protocols/view/290401

PhenX Toolkit. (2025 December 05). Food Swamp. https://www.phenxtoolkit.org/protocols/view/290501

PhenX Toolkit. (2025 December 05). Percent Unionized for Non-Agricultural Labor Force. https://www.phenxtoolkit.org/protocols/view/290601

PhenX Toolkit. (2025 December 05). Race/Ethnic Residential Segregation - U.S. Census. https://www.phenxtoolkit.org/protocols/view/211402

PhenX Toolkit. (2025 December 05). Race/Ethnic Residential Segregation - American Community Survey. https://www.phenxtoolkit.org/protocols/view/211403

PhenX Toolkit. (2025 December 05). Race/Ethnic Residential Segregation - Separation (S) Index, Unbiased. https://www.phenxtoolkit.org/protocols/view/211404

PhenX Toolkit. (2025 December 05). Social Vulnerability. https://www.phenxtoolkit.org/protocols/view/290701

PhenX Toolkit. (2025 December 05). Residential Concentrations of Income. https://www.phenxtoolkit.org/protocols/view/290801

PhenX Toolkit. (2025 December 05). Minimum Wage. https://www.phenxtoolkit.org/protocols/view/290901

PhenX Toolkit. (2025 December 05). Neighborhood Walking and Biking Environment. https://www.phenxtoolkit.org/protocols/view/291001

PhenX Toolkit. (2025 December 05). Water Access and Sanitation. https://www.phenxtoolkit.org/protocols/view/291101

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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