My Toolkit

DD = Data Dictionary
DCW = Data Collection Worksheet

Select All Remove Selected

Basic Report
Detailed Report
Protocol in PDF
Protocol in Español
Protocol in 中文
DCW in Word Format
DCW in Español
DCW in 中文
DD in RTF Format
DD in CSV Format
DD in REDCap Format

Empty My Toolkit

Essential Protocols

Total Protocols in My Toolkit: 52
	Birthplace American Community Survey (ACS), 2008 Remove
	Birthplace of Parents American Community Survey (ACS), 2008 Remove
	Birthplace of Grandparents American Community Survey (ACS), 2008 Check all Birthplace of Parents Add to Toolkit Remove
	Educational Attainment - Individual National Health and Nutrition Examination Survey (NHANES), Demographics Module, 2019-2020 Remove
	Current Employment Status Panel Study of Income Dynamics (PSID), 2007 Check all Current Age Add to Toolkit Remove
	Current Marital Status Behavioral Risk Factor Surveillance System (BRFSS), Core Section 8: Demographics, 2018 Check all Current Age Add to Toolkit Remove
	Health Insurance Coverage Health Reform Monitoring Survey, 2015 Check all Current Age Add to Toolkit Remove
	Marital Status of Primary Caregiver Silent Cerebral Infarct Multi-Center Clinical Trial (SIT), Demographic/Phenotypic Information Check all Current Age Add to Toolkit Remove
	Pediatric School Performance Pediatric Hydroxyurea, Phase III Clinical Trial (BABY HUG), Part VII: Education - School Questionnaire Check all Current Age Add to Toolkit Remove
	Years Living in the U.S. National Health Interview Survey (NHIS), Family Questionnaire, 2007 Check all Birthplace Current Age Add to Toolkit Remove
	Medication Inventory Multi-Ethnic Study of Arthrosclerosis (MESA), Medications, 2000 Check all Current Age Add to Toolkit Remove
	Frequency of Sickle Cell Pain Episodes Per Year Cooperative Study of Sickle Cell Disease (CSSCD), Form 25 - Painful Episodes Check all Current Age Add to Toolkit Remove
	History of Transfusion Telen, M.J., et al. Alloimmunization in sickle cell disease: changing antibody specificities and association with chronic pain and decreased survival. TRANSFUSION, 2015 Check all Current Age Add to Toolkit 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
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. (2026 April 20). Birthplace. https://www.phenxtoolkit.org/protocols/view/10201

PhenX Toolkit. (2026 April 20). Birthplace of Parents. https://www.phenxtoolkit.org/protocols/view/10301

PhenX Toolkit. (2026 April 20). Birthplace of Grandparents. https://www.phenxtoolkit.org/protocols/view/10401

PhenX Toolkit. (2026 April 20). Educational Attainment - Individual. https://www.phenxtoolkit.org/protocols/view/11002

PhenX Toolkit. (2026 April 20). Current Employment Status. https://www.phenxtoolkit.org/protocols/view/11301

PhenX Toolkit. (2026 April 20). Current Marital Status. https://www.phenxtoolkit.org/protocols/view/10903

PhenX Toolkit. (2026 April 20). Health Insurance Coverage. https://www.phenxtoolkit.org/protocols/view/11502

PhenX Toolkit. (2026 April 20). Marital Status of Primary Caregiver. https://www.phenxtoolkit.org/protocols/view/840101

PhenX Toolkit. (2026 April 20). Pediatric School Performance. https://www.phenxtoolkit.org/protocols/view/840201

PhenX Toolkit. (2026 April 20). Years Living in the U.S.. https://www.phenxtoolkit.org/protocols/view/11201

PhenX Toolkit. (2026 April 20). Medication Inventory. https://www.phenxtoolkit.org/protocols/view/140301

PhenX Toolkit. (2026 April 20). Frequency of Sickle Cell Pain Episodes Per Year. https://www.phenxtoolkit.org/protocols/view/830101

PhenX Toolkit. (2026 April 20). History of Transfusion. https://www.phenxtoolkit.org/protocols/view/830201

PhenX Toolkit. (2026 April 20). Annual Household Family Income and Number of People Supported. https://www.phenxtoolkit.org/protocols/view/12001

PhenX Toolkit. (2026 April 20). Counts of Acute Bleeds in Hemophilia. https://www.phenxtoolkit.org/protocols/view/910101

PhenX Toolkit. (2026 April 20). Factor IX Activity in Plasma Using the Chromogenic Substrate Assay. https://www.phenxtoolkit.org/protocols/view/910201

PhenX Toolkit. (2026 April 20). Factor IX Activity in Plasma Using the One-Stage Clotting Factor Assay. https://www.phenxtoolkit.org/protocols/view/910202

PhenX Toolkit. (2026 April 20). Factor VIII Activity in Plasma Using the Chromogenic Substrate Assay. https://www.phenxtoolkit.org/protocols/view/910301

PhenX Toolkit. (2026 April 20). Factor VIII Activity in Plasma Using the One-Stage Clotting Factor Assay. https://www.phenxtoolkit.org/protocols/view/910302

PhenX Toolkit. (2026 April 20). Determination of Factor IX Inhibitors: Bethesda Assay with Nijmegen Modification Using Chromogenic Substrate Assay. https://www.phenxtoolkit.org/protocols/view/910401

PhenX Toolkit. (2026 April 20). 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 April 20). Determination of Factor VIII Inhibitors: Bethesda Assay with Nijmegen Modification Using Chromogenic Substrate Assay. https://www.phenxtoolkit.org/protocols/view/910501

PhenX Toolkit. (2026 April 20). 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 April 20). School Attendance - Child. https://www.phenxtoolkit.org/protocols/view/910601

PhenX Toolkit. (2026 April 20). School and Work Attendance - Adult. https://www.phenxtoolkit.org/protocols/view/910602

PhenX Toolkit. (2026 April 20). Disease-specific Health-related Quality of Life in Hemophilia. https://www.phenxtoolkit.org/protocols/view/910701

PhenX Toolkit. (2026 April 20). Hemophilia-specific Functional Ability - Child. https://www.phenxtoolkit.org/protocols/view/910801

PhenX Toolkit. (2026 April 20). Hemophilia-specific Functional Ability - Adult. https://www.phenxtoolkit.org/protocols/view/910802

PhenX Toolkit. (2026 April 20). 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 April 20). 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 April 20). Individual Pharmacokinetic Study Using Chromogenic Assay - Standard Half-life Factor IX Products. https://www.phenxtoolkit.org/protocols/view/910903

PhenX Toolkit. (2026 April 20). Individual Pharmacokinetic Study Using Chromogenic Assay - Extended Half-life Factor IX Products. https://www.phenxtoolkit.org/protocols/view/910904

PhenX Toolkit. (2026 April 20). 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 April 20). 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 April 20). Population-based Pharmacokinetic Study Using Chromogenic Substrate Assay - Standard Half-life Factor IX Products. https://www.phenxtoolkit.org/protocols/view/911003

PhenX Toolkit. (2026 April 20). Population-based Pharmacokinetic Study Using Chromogenic Substrate Assay - Extended Half-life Factor IX Products. https://www.phenxtoolkit.org/protocols/view/911004

PhenX Toolkit. (2026 April 20). 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 April 20). 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 April 20). Individual Pharmacokinetic Study Using Chromogenic Substrate Assay - Standard Half-life Factor VIII Products. https://www.phenxtoolkit.org/protocols/view/911103

PhenX Toolkit. (2026 April 20). Individual Pharmacokinetic Study Using Chromogenic Substrate Assay - Extended Half-life Factor VIII Products. https://www.phenxtoolkit.org/protocols/view/911104

PhenX Toolkit. (2026 April 20). 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 April 20). 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 April 20). Population-based Pharmacokinetic Study Using Chromogenic Substrate Assay - Standard Half-life Factor VIII Products. https://www.phenxtoolkit.org/protocols/view/911203

PhenX Toolkit. (2026 April 20). Population-based Pharmacokinetic Study Using Chromogenic Substrate Assay - Extended Half-life Factor VIII Products. https://www.phenxtoolkit.org/protocols/view/911204

PhenX Toolkit. (2026 April 20). 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 April 20). 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 April 20). 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 April 20). 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 April 20). 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 April 20). Adherence to Prophylactic Clotting Factor Treatment Regimens in Hemophilia. https://www.phenxtoolkit.org/protocols/view/911601

PhenX Toolkit. (2026 April 20). Adherence to Episodic Clotting Factor Treatment Regimens in Hemophilia. https://www.phenxtoolkit.org/protocols/view/911602

PhenX Toolkit. (2026 April 20). 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.

Share This Toolkit

Name Toolkit

Enter the name you wish to give the toolkit below.

Customized Email Note

Enter a customized note to send to any new users you share this toolkit with. Users who already have access to this saved toolkit will not receive a new email.

User List

Press add and then enter the email address of anyone you wish to share this toolkit with.