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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. (2024 October 10). Counts of Acute Bleeds in Hemophilia, PhenX Toolkit. https://www.phenxtoolkit.org/protocols/view/910101 

PhenX Toolkit. (2024 October 10). Factor IX Activity in Plasma Using the Chromogenic Substrate Assay, PhenX Toolkit. https://www.phenxtoolkit.org/protocols/view/910201 

PhenX Toolkit. (2024 October 10). Factor IX Activity in Plasma Using the One-Stage Clotting Factor Assay, PhenX Toolkit. https://www.phenxtoolkit.org/protocols/view/910202 

PhenX Toolkit. (2024 October 10). Factor VIII Activity in Plasma Using the Chromogenic Substrate Assay, PhenX Toolkit. https://www.phenxtoolkit.org/protocols/view/910301 

PhenX Toolkit. (2024 October 10). Factor VIII Activity in Plasma Using the One-Stage Clotting Factor Assay, PhenX Toolkit. https://www.phenxtoolkit.org/protocols/view/910302 

PhenX Toolkit. (2024 October 10). Determination of Factor IX Inhibitors: Bethesda Assay with Nijmegen Modification Using Chromogenic Substrate Assay, PhenX Toolkit. https://www.phenxtoolkit.org/protocols/view/910401 

PhenX Toolkit. (2024 October 10). Determination of Factor IX Inhibitors: Bethesda Assay with or without Nijmegen Modification Using One-Stage Clotting Factor Assay, PhenX Toolkit. https://www.phenxtoolkit.org/protocols/view/910402 

PhenX Toolkit. (2024 October 10). Determination of Factor VIII Inhibitors: Bethesda Assay with Nijmegen Modification Using Chromogenic Substrate Assay, PhenX Toolkit. https://www.phenxtoolkit.org/protocols/view/910501 

PhenX Toolkit. (2024 October 10). Determination of Factor VIII Inhibitors: Bethesda Assay with Nijmegen Modification Using One-Stage Clotting Factor Assay, PhenX Toolkit. https://www.phenxtoolkit.org/protocols/view/910502 

PhenX Toolkit. (2024 October 10). School Attendance - Child, PhenX Toolkit. https://www.phenxtoolkit.org/protocols/view/910601 

PhenX Toolkit. (2024 October 10). School and Work Attendance - Adult, PhenX Toolkit. https://www.phenxtoolkit.org/protocols/view/910602 

PhenX Toolkit. (2024 October 10). Disease-specific Health-related Quality of Life in Hemophilia, PhenX Toolkit. https://www.phenxtoolkit.org/protocols/view/910701 

PhenX Toolkit. (2024 October 10). Hemophilia-specific Functional Ability - Child, PhenX Toolkit. https://www.phenxtoolkit.org/protocols/view/910801 

PhenX Toolkit. (2024 October 10). Hemophilia-specific Functional Ability - Adult, PhenX Toolkit. https://www.phenxtoolkit.org/protocols/view/910802 

PhenX Toolkit. (2024 October 10). Individual Pharmacokinetic Study using One-stage Clotting Factor Assay - Standard Half-life Factor IX Products, PhenX Toolkit. https://www.phenxtoolkit.org/protocols/view/910901 

PhenX Toolkit. (2024 October 10). Individual Pharmacokinetic Study using One-stage Clotting Factor Assay - Extended Half-life Factor IX Products, PhenX Toolkit. https://www.phenxtoolkit.org/protocols/view/910902 

PhenX Toolkit. (2024 October 10). Individual Pharmacokinetic Study Using Chromogenic Assay - Standard Half-life Factor IX Products, PhenX Toolkit. https://www.phenxtoolkit.org/protocols/view/910903 

PhenX Toolkit. (2024 October 10). Individual Pharmacokinetic Study Using Chromogenic Assay - Extended Half-life Factor IX Products, PhenX Toolkit. https://www.phenxtoolkit.org/protocols/view/910904 

PhenX Toolkit. (2024 October 10). Population-based Pharmacokinetic Study Using One-stage Clotting Factor Assay - Standard Half-life Factor IX Products, PhenX Toolkit. https://www.phenxtoolkit.org/protocols/view/911001 

PhenX Toolkit. (2024 October 10). Population-based Pharmacokinetic Study Using One-stage Clotting Factor Assay - Extended Half-life Factor IX Products, PhenX Toolkit. https://www.phenxtoolkit.org/protocols/view/911002 

PhenX Toolkit. (2024 October 10). Population-based Pharmacokinetic Study Using Chromogenic Substrate Assay - Standard Half-life Factor IX Products, PhenX Toolkit. https://www.phenxtoolkit.org/protocols/view/911003 

PhenX Toolkit. (2024 October 10). Population-based Pharmacokinetic Study Using Chromogenic Substrate Assay - Extended Half-life Factor IX Products, PhenX Toolkit. https://www.phenxtoolkit.org/protocols/view/911004 

PhenX Toolkit. (2024 October 10). Individual Pharmacokinetic Study Using One-stage Clotting Factor Assay - Standard Half-life Factor VIII Products, PhenX Toolkit. https://www.phenxtoolkit.org/protocols/view/911101 

PhenX Toolkit. (2024 October 10). Individual Pharmacokinetic Study Using One-stage Clotting Factor Assay - Extended Half-life Factor VIII Products, PhenX Toolkit. https://www.phenxtoolkit.org/protocols/view/911102 

PhenX Toolkit. (2024 October 10). Individual Pharmacokinetic Study Using Chromogenic Substrate Assay - Standard Half-life Factor VIII Products, PhenX Toolkit. https://www.phenxtoolkit.org/protocols/view/911103 

PhenX Toolkit. (2024 October 10). Individual Pharmacokinetic Study Using Chromogenic Substrate Assay - Extended Half-life Factor VIII Products, PhenX Toolkit. https://www.phenxtoolkit.org/protocols/view/911104 

PhenX Toolkit. (2024 October 10). Population-based Pharmacokinetic Study Using One-stage Clotting Factor Assay - Standard Half-life Factor VIII Products, PhenX Toolkit. https://www.phenxtoolkit.org/protocols/view/911201 

PhenX Toolkit. (2024 October 10). Population-based Pharmacokinetic Study Using One-stage Clotting Factor Assay - Extended Half-life Factor VIII Products, PhenX Toolkit. https://www.phenxtoolkit.org/protocols/view/911202 

PhenX Toolkit. (2024 October 10). Population-based Pharmacokinetic Study Using Chromogenic Substrate Assay - Standard Half-life Factor VIII Products, PhenX Toolkit. https://www.phenxtoolkit.org/protocols/view/911203 

PhenX Toolkit. (2024 October 10). Population-based Pharmacokinetic Study Using Chromogenic Substrate Assay - Extended Half-life Factor VIII Products, PhenX Toolkit. https://www.phenxtoolkit.org/protocols/view/911204 

PhenX Toolkit. (2024 October 10). Emicizumab Therapy: Determination of Factor VIII Inhibitors Using the Bethesda Assay with Nijmegen Modification: Chromogenic Substrate Assay with Bovine Reagents, PhenX Toolkit. https://www.phenxtoolkit.org/protocols/view/911301 

PhenX Toolkit. (2024 October 10). Emicizumab Therapy: Individual Pharmacokinetic Study of Standard Half-life Factor VIII Products: Chromogenic Substrate Assay with Bovine Reagents, PhenX Toolkit. https://www.phenxtoolkit.org/protocols/view/911401 

PhenX Toolkit. (2024 October 10). Emicizumab Therapy: Individual Pharmacokinetic Study of Extended Half-life Factor VIII Products: Chromogenic Substrate Assay with Bovine Reagents, PhenX Toolkit. https://www.phenxtoolkit.org/protocols/view/911402 

PhenX Toolkit. (2024 October 10). Emicizumab Therapy: Population-based Pharmacokinetic Study of Standard Half-life Factor VIII Products: Chromogenic Substrate Assay with Bovine Reagents, PhenX Toolkit. https://www.phenxtoolkit.org/protocols/view/911501 

PhenX Toolkit. (2024 October 10). Emicizumab Therapy: Population-based Pharmacokinetic Study of Extended Half-life Factor VIII Products: Chromogenic Substrate Assay with Bovine Reagents, PhenX Toolkit. https://www.phenxtoolkit.org/protocols/view/911502 

PhenX Toolkit. (2024 October 10). Adherence to Prophylactic Clotting Factor Treatment Regimens in Hemophilia, PhenX Toolkit. https://www.phenxtoolkit.org/protocols/view/911601 

PhenX Toolkit. (2024 October 10). Adherence to Episodic Clotting Factor Treatment Regimens in Hemophilia, PhenX Toolkit. https://www.phenxtoolkit.org/protocols/view/911602 

PhenX Toolkit. (2024 October 10). Hemophilia Joint Health Score, PhenX Toolkit. 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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