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Hemophilia Inhibitor

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American Thrombosis and Hemostasis Network (ATHN) dataset Core Data Elements, Version 2.0
#910101

Validated Hemophilia Regimen Treatment Adherence Scale - On-Demand (VERITAS-PRN(TM))
#911602

Validated Hemophilia Regimen Treatment Adherence Scale - Prophylaxis (VERITAS-Pro(TM))
#911601

Blanchette et al. Definitions in hemophilia: communication from the SSC of the ISTH. J Thromb Haemost, 2014
#910401

Lippi, G., et al. Quality standards for sample collection in coagulation testing. Seminars in Thrombosis and Hemostasis, 2012
#910402

Blanchette et al. Definitions in hemophilia: communication from the SSC of the ISTH. J Thromb Haemost, 2014
#910501

Blanchette et al. Definitions in hemophilia: communication from the SSC of the ISTH. J Thromb Haemost, 2014
#910502

Haem-A-QoL
#910701

Medical and Scientific Advisory Committee (MASAC) of the National Hemophilia Foundation (NHF), 2017
#911301

Medical and Scientific Advisory Committee (MASAC) of the National Hemophilia Foundation (NHF), 2017
#911402

Medical and Scientific Advisory Committee (MASAC) of the National Hemophilia Foundation (NHF), 2017
#911401

Medical and Scientific Advisory Committee (MASAC) of the National Hemophilia Foundation (NHF), 2017
#911502

Medical and Scientific Advisory Committee (MASAC) of the National Hemophilia Foundation (NHF), 2017
#911501

Blanchette et al. Definitions in hemophilia: communication from the SSC of the ISTH. J Thromb Haemost, 2014
#910201

Blanchette et al. Definitions in hemophilia: communication from the SSC of the ISTH. J Thromb Haemost, 2014
#910202

Blanchette et al. Definitions in hemophilia: communication from the SSC of the ISTH. J Thromb Haemost, 2014
#910301

Blanchette et al. Definitions in hemophilia: communication from the SSC of the ISTH. J Thromb Haemost, 2014
#910302

Hemophilia Joint Health Score (HJHS), 2.1
#911701

Hemophilia Activities List (HAL)
#910802

Pediatric Hemophilia Activities List (PedHAL)
#910801

Adcock Funk et al. Quality standards for sample processing, transportation, and storage in hemostasis testing. Semin Thromb Hemost, 2012
#910904

N/A; see source
#910903

Adcock Funk et al. Quality standards for sample processing, transportation, and storage in hemostasis testing. Semin Thromb Hemost, 2012
#911104

Lee et al. Scientific and Standardization Committee Communication: The Design and Analysis of Pharmacokinetic Studies of Coagulation Factors. ISTH, 2001
#911103

Adcock Funk et al., Quality standards for sample processing, transportation, and storage in hemostasis testing. Semin Thromb Hemost, 2012
#910902

Adcock Funk et al. Quality standards for sample processing, transportation, and storage in hemostasis testing. Semin Thromb Hemost, 2012
#911102

Lee et al., Scientific and Standardization Committee Communication: The Design and Analysis of Pharmacokinetic Studies of Coagulation Factors. ISTH, 2001.
#910901

Lee et al. Scientific and Standardization Committee Communication: The Design and Analysis of Pharmacokinetic Studies of Coagulation Factors. ISTH, 2001
#911101

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
#911004

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
#911204

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
#911003

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
#911203

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
#911002

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
#911202

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
#911001

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
#911201

Work Productivity and Activity Impairment Questionnaire (WPAI), General Health (WPAI:GH), V2.0
#910602

National Survey of Childrens Health (NSCH), 2016
#910601
Scope of Collection
Element Considered Final Measures in Toolkit
Inhibitors Factor IX Activity in Plasma
Factor VIII Activity in Plasma
Quantitative Measure of Factor IX Inhibitor Activity
Quantitative Measure of Factor VIII Inhibitor Activity
Quantitative Measure of Factor VIII Inhibitor Activity in the Presence of Emicizumab
Bleeding Counts of Acute Bleeds in Hemophilia
Outcome measures to evaluate effectiveness of therapy Response to Factor IX Infusion – Individual Pharmacokinetic Study
Response to Factor IX Infusion – Population-based Pharmacokinetic Study
Response to Factor VIII Infusion – Individual Pharmacokinetic Study
Response to Factor VIII Infusion – Population-based Pharmacokinetic Study
Response to Factor VIII Infusion in the Presence of Emicizumab – Individual Pharmacokinetic Study
Response to Factor VIII Infusion in the Presence of Emicizumab – Population-based Pharmacokinetic Study
Patient reported outcomes School and Work Attendance
Disease-specific Health-related Quality of Life in Hemophilia
Physical activity and function Hemophilia-specific Functional Activity
Joint health Score
Adherence to treatment Patient Recall of Clotting Factor Administration
Utilization of health care
Working Group Roster:

WG Members:

Barbara Konkle, MD, Co-Chair
Bloodworks Northwest
Seattle, WA
Steven Pipe, MD, Co-Chair
University of Michigan
Ann Arbor, MI
Tyler Buckner, MD
University of Colorado
Aurora, CO
Donna DiMichele, MD
National Heart, Lung, and Blood Institute
Bethesda, MD
Diane Nugent, MD
Case Western Reserve University
Cleveland, OH
Crystal Watson, BSW
American Thrombosis & Hemostasis
Rochester, NY
Ellen M. Werner, PhD, MA
National Heart, Lung, and Blood Institute (NHLBI)
Blood Diseases Branch
Bethesda, MD

Hemophilia Inhibitor Research Panel Liaison, WG Manager and WG Supervisor:

Lauren Gridley, MS, WG Manager
RTI International
Research Triangle Park, NC
Wayne Huggins, PhD, WG Supervisor
RTI International
Research Triangle Park, NC

Supplemental Information includes protocols that the Working Group or Expert Review Panel considered useful and highly relevant to the domain but do not meet the criteria for inclusion in the Toolkit.

There is no supplemental information for this collection.

Additional Information:

There is no additional information for this collection.

Measure Protocols Domain/Collection
Counts of Acute Bleeds in Hemophilia Add to My Toolkit Counts of Acute Bleeds in Hemophilia Hemophilia Inhibitor Research
Patient Recall of Clotting Factor Administration Add to My Toolkit Adherence to Episodic Clotting Factor Treatment Regimens in Hemophilia Hemophilia Inhibitor Research
Add to My Toolkit Adherence to Prophylactic Clotting Factor Treatment Regimens in Hemophilia Hemophilia Inhibitor Research
Quantitative Measure of Factor IX Inhibitor Activity Add to My Toolkit Determination of Factor IX Inhibitors: Bethesda Assay with Nijmegen Modification Using Chromogenic Substrate Assay Hemophilia Inhibitor Research
Add to My Toolkit Determination of Factor IX Inhibitors: Bethesda Assay with or without Nijmegen Modification Using One-Stage Clotting Factor Assay Hemophilia Inhibitor Research
Quantitative Measure of Factor VIII Inhibitor Activity Add to My Toolkit Determination of Factor VIII Inhibitors: Bethesda Assay with Nijmegen Modification Using Chromogenic Substrate Assay Hemophilia Inhibitor Research
Add to My Toolkit Determination of Factor VIII Inhibitors: Bethesda Assay with Nijmegen Modification Using One-Stage Clotting Factor Assay Hemophilia Inhibitor Research
Disease-specific Health-related Quality of Life in Hemophilia Add to My Toolkit Disease-specific Health-related Quality of Life in Hemophilia Hemophilia Inhibitor Research
Quantitative Measure of Factor VIII Inhibitor Activity in the Presence of Emicizumab Add to My Toolkit Emicizumab Therapy: Determination of Factor VIII Inhibitors Using the Bethesda Assay with Nijmegen Modification: Chromogenic Substrate Assay with Bovine Reagents Hemophilia Inhibitor Research
Response to Factor VIII Infusion in the Presence of Emicizumab - Individual Pharmacokinetic Study Add to My Toolkit Emicizumab Therapy: Individual Pharmacokinetic Study of Extended Half-life Factor VIII Products: Chromogenic Substrate Assay with Bovine Reagents Hemophilia Inhibitor Research
Add to My Toolkit Emicizumab Therapy: Individual Pharmacokinetic Study of Standard Half-life Factor VIII Products: Chromogenic Substrate Assay with Bovine Reagents Hemophilia Inhibitor Research
Response to Factor VIII Infusion in the Presence of Emicizumab - Population Pharmacokinetic Study Add to My Toolkit Emicizumab Therapy: Population-based Pharmacokinetic Study of Extended Half-life Factor VIII Products: Chromogenic Substrate Assay with Bovine Reagents Hemophilia Inhibitor Research
Add to My Toolkit Emicizumab Therapy: Population-based Pharmacokinetic Study of Standard Half-life Factor VIII Products: Chromogenic Substrate Assay with Bovine Reagents Hemophilia Inhibitor Research
Factor IX Activity in Plasma Add to My Toolkit Factor IX Activity in Plasma Using the Chromogenic Substrate Assay Hemophilia Inhibitor Research
Add to My Toolkit Factor IX Activity in Plasma Using the One-Stage Clotting Factor Assay Hemophilia Inhibitor Research
Factor VIII Activity in Plasma Add to My Toolkit Factor VIII Activity in Plasma Using the Chromogenic Substrate Assay Hemophilia Inhibitor Research
Add to My Toolkit Factor VIII Activity in Plasma Using the One-Stage Clotting Factor Assay Hemophilia Inhibitor Research
Joint Damage Assessment in Hemophilia Patients Add to My Toolkit Hemophilia Joint Health Score Hemophilia Inhibitor Research
Hemophilia-specific Functional Ability Add to My Toolkit Hemophilia-specific Functional Ability - Adult Hemophilia Inhibitor Research
Add to My Toolkit Hemophilia-specific Functional Ability - Child Hemophilia Inhibitor Research
Response to Factor IX Infusion - Individual Pharmacokinetic Study Add to My Toolkit Individual Pharmacokinetic Study Using Chromogenic Assay - Extended Half-life Factor IX Products Hemophilia Inhibitor Research
Add to My Toolkit Individual Pharmacokinetic Study Using Chromogenic Assay - Standard Half-life Factor IX Products Hemophilia Inhibitor Research
Add to My Toolkit Individual Pharmacokinetic Study using One-stage Clotting Factor Assay - Extended Half-life Factor IX Products Hemophilia Inhibitor Research
Add to My Toolkit Individual Pharmacokinetic Study using One-stage Clotting Factor Assay - Standard Half-life Factor IX Products Hemophilia Inhibitor Research
Response to Factor VIII Infusion - Individual Pharmacokinetic Study Add to My Toolkit Individual Pharmacokinetic Study Using Chromogenic Substrate Assay - Extended Half-life Factor VIII Products Hemophilia Inhibitor Research
Add to My Toolkit Individual Pharmacokinetic Study Using Chromogenic Substrate Assay - Standard Half-life Factor VIII Products Hemophilia Inhibitor Research
Add to My Toolkit Individual Pharmacokinetic Study Using One-stage Clotting Factor Assay - Extended Half-life Factor VIII Products Hemophilia Inhibitor Research
Add to My Toolkit Individual Pharmacokinetic Study Using One-stage Clotting Factor Assay - Standard Half-life Factor VIII Products Hemophilia Inhibitor Research
Response to Factor IX Infusion - Population-based Pharmacokinetic Study Add to My Toolkit Population-based Pharmacokinetic Study Using Chromogenic Substrate Assay - Extended Half-life Factor IX Products Hemophilia Inhibitor Research
Add to My Toolkit Population-based Pharmacokinetic Study Using Chromogenic Substrate Assay - Standard Half-life Factor IX Products Hemophilia Inhibitor Research
Add to My Toolkit Population-based Pharmacokinetic Study Using One-stage Clotting Factor Assay - Extended Half-life Factor IX Products Hemophilia Inhibitor Research
Add to My Toolkit Population-based Pharmacokinetic Study Using One-stage Clotting Factor Assay - Standard Half-life Factor IX Products Hemophilia Inhibitor Research
Response to Factor VIII Infusion - Population-based Pharmacokinetic Study Add to My Toolkit Population-based Pharmacokinetic Study Using Chromogenic Substrate Assay - Extended Half-life Factor VIII Products Hemophilia Inhibitor Research
Add to My Toolkit Population-based Pharmacokinetic Study Using Chromogenic Substrate Assay - Standard Half-life Factor VIII Products Hemophilia Inhibitor Research
Add to My Toolkit Population-based Pharmacokinetic Study Using One-stage Clotting Factor Assay - Extended Half-life Factor VIII Products Hemophilia Inhibitor Research
Add to My Toolkit Population-based Pharmacokinetic Study Using One-stage Clotting Factor Assay - Standard Half-life Factor VIII Products Hemophilia Inhibitor Research
School and Work Attendance Add to My Toolkit School and Work Attendance - Adult Hemophilia Inhibitor Research
Add to My Toolkit School Attendance - Child Hemophilia Inhibitor Research