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DD = Data Dictionary
DCW = Data Collection Worksheet

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Essential Protocols

	Counts of Acute Bleeds in Hemophilia American Thrombosis and Hemostasis Network (ATHN) dataset Core Data Elements, Version 2.0 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 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 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 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 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 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 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 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 Remove
	School Attendance - Child National Survey of Childrens Health (NSCH), 2016 Remove
	School and Work Attendance - Adult Work Productivity and Activity Impairment Questionnaire (WPAI), General Health (WPAI:GH), V2.0 Remove
	Disease-specific Health-related Quality of Life in Hemophilia Haem-A-QoL Remove
	Hemophilia-specific Functional Ability - Child Pediatric Hemophilia Activities List (PedHAL) Remove
	Hemophilia-specific Functional Ability - Adult Hemophilia Activities List (HAL) 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. 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 Remove
	Individual Pharmacokinetic Study Using Chromogenic Assay - Standard Half-life Factor IX Products 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 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 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 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 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 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 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 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 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 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 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 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 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 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 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 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 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 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 Remove
	Adherence to Prophylactic Clotting Factor Treatment Regimens in Hemophilia Validated Hemophilia Regimen Treatment Adherence Scale - Prophylaxis (VERITAS-Pro(TM)) Remove
	Adherence to Episodic Clotting Factor Treatment Regimens in Hemophilia Validated Hemophilia Regimen Treatment Adherence Scale - On-Demand (VERITAS-PRN(TM)) Remove
	Hemophilia Joint Health Score Hemophilia Joint Health Score (HJHS), 2.1 Remove
Total Protocols in My Toolkit: 38

Create Citations

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

PhenX Toolkit. (2025 February 02). Counts of Acute Bleeds in Hemophilia. https://www.phenxtoolkit.org/protocols/view/910101

PhenX Toolkit. (2025 February 02). Factor IX Activity in Plasma Using the Chromogenic Substrate Assay. https://www.phenxtoolkit.org/protocols/view/910201

PhenX Toolkit. (2025 February 02). Factor IX Activity in Plasma Using the One-Stage Clotting Factor Assay. https://www.phenxtoolkit.org/protocols/view/910202

PhenX Toolkit. (2025 February 02). Factor VIII Activity in Plasma Using the Chromogenic Substrate Assay. https://www.phenxtoolkit.org/protocols/view/910301

PhenX Toolkit. (2025 February 02). Factor VIII Activity in Plasma Using the One-Stage Clotting Factor Assay. https://www.phenxtoolkit.org/protocols/view/910302

PhenX Toolkit. (2025 February 02). Determination of Factor IX Inhibitors: Bethesda Assay with Nijmegen Modification Using Chromogenic Substrate Assay. https://www.phenxtoolkit.org/protocols/view/910401

PhenX Toolkit. (2025 February 02). 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 February 02). Determination of Factor VIII Inhibitors: Bethesda Assay with Nijmegen Modification Using Chromogenic Substrate Assay. https://www.phenxtoolkit.org/protocols/view/910501

PhenX Toolkit. (2025 February 02). 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 February 02). School Attendance - Child. https://www.phenxtoolkit.org/protocols/view/910601

PhenX Toolkit. (2025 February 02). School and Work Attendance - Adult. https://www.phenxtoolkit.org/protocols/view/910602

PhenX Toolkit. (2025 February 02). Disease-specific Health-related Quality of Life in Hemophilia. https://www.phenxtoolkit.org/protocols/view/910701

PhenX Toolkit. (2025 February 02). Hemophilia-specific Functional Ability - Child. https://www.phenxtoolkit.org/protocols/view/910801

PhenX Toolkit. (2025 February 02). Hemophilia-specific Functional Ability - Adult. https://www.phenxtoolkit.org/protocols/view/910802

PhenX Toolkit. (2025 February 02). 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 February 02). 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 February 02). Individual Pharmacokinetic Study Using Chromogenic Assay - Standard Half-life Factor IX Products. https://www.phenxtoolkit.org/protocols/view/910903

PhenX Toolkit. (2025 February 02). Individual Pharmacokinetic Study Using Chromogenic Assay - Extended Half-life Factor IX Products. https://www.phenxtoolkit.org/protocols/view/910904

PhenX Toolkit. (2025 February 02). 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 February 02). 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 February 02). Population-based Pharmacokinetic Study Using Chromogenic Substrate Assay - Standard Half-life Factor IX Products. https://www.phenxtoolkit.org/protocols/view/911003

PhenX Toolkit. (2025 February 02). Population-based Pharmacokinetic Study Using Chromogenic Substrate Assay - Extended Half-life Factor IX Products. https://www.phenxtoolkit.org/protocols/view/911004

PhenX Toolkit. (2025 February 02). 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 February 02). 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 February 02). Individual Pharmacokinetic Study Using Chromogenic Substrate Assay - Standard Half-life Factor VIII Products. https://www.phenxtoolkit.org/protocols/view/911103

PhenX Toolkit. (2025 February 02). Individual Pharmacokinetic Study Using Chromogenic Substrate Assay - Extended Half-life Factor VIII Products. https://www.phenxtoolkit.org/protocols/view/911104

PhenX Toolkit. (2025 February 02). 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 February 02). 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 February 02). Population-based Pharmacokinetic Study Using Chromogenic Substrate Assay - Standard Half-life Factor VIII Products. https://www.phenxtoolkit.org/protocols/view/911203

PhenX Toolkit. (2025 February 02). Population-based Pharmacokinetic Study Using Chromogenic Substrate Assay - Extended Half-life Factor VIII Products. https://www.phenxtoolkit.org/protocols/view/911204

PhenX Toolkit. (2025 February 02). 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 February 02). 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 February 02). 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 February 02). 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 February 02). 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 February 02). Adherence to Prophylactic Clotting Factor Treatment Regimens in Hemophilia. https://www.phenxtoolkit.org/protocols/view/911601

PhenX Toolkit. (2025 February 02). Adherence to Episodic Clotting Factor Treatment Regimens in Hemophilia. https://www.phenxtoolkit.org/protocols/view/911602

PhenX Toolkit. (2025 February 02). Hemophilia Joint Health Score. https://www.phenxtoolkit.org/protocols/view/911701

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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