Hemophilia AWAPPS-HemoNCT03533504
Web Accessible Population Pharmacokinetics Service - Hemophilia: Sources of Variability
An observational study of Hemophilia A and Hemophilia B, run by McMaster University at 1 site in Canada.
Trial summary
Using anonymized patient data collected as part of the WAPPS-Hemo project to explore the sources of variability in individual pharmacokinetics (PK); use the sources of variability to improve the performance of the WAPPS-Hemo models through the addition of the predictors of PK variability as covariates. Read more about this study
- Who is it for?
- Any age
- Conditions the study is for
- Hemophilia A, Hemophilia B
- What is being tested?
- Variability in individual PK
- Type of treatment
- Injection or infusion
- How many people
- 1,000 participants
- Where
- 1 siteCanada
- Study dates
- 9 May 2018to 30 Jun 2024
- Phase
- Observational
- Are there results?
- None posted in the registry
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages Any age
- All sexes
- No healthy volunteers
- Child, Adult, Older adult
Study population: Participates are individuals with hemophilia A or B, any severity, who have agreed to input of their data in the WAPPS-Hemo database, and who have sufficient infusion/PK data.
Who may be able to join
- individuals with hemophilia A or B
- infusion/PK data is available on the WAPPS-Hemo database
- given informed consent to data input on the WAPPS-Hemo database
Who cannot join
- individuals currently undergoing immune tolerance induction
Trial locations and contacts
1 site in 1 country.
About this study
Official title: Exploring Sources of Variability in Individual Pharmacokinetics of Factor VIII and IX Concentrates in Hemophilia in the Web Accessible Population Pharmacokinetics Service - Hemophilia (WAPPS-Hemo) Database
Using anonymized patient data collected as part of the WAPPS-Hemo project to explore the sources of variability in individual pharmacokinetics (PK); use the sources of variability to improve the performance of the WAPPS-Hemo models through the addition of the predictors of PK variability as covariates.
Read the detailed description
Innovation and expected results: As the classical PK approach typically requires 11 samples, which can be a burden to the patient, specific subgroups of individuals are often excluded from analysis-including children, elderly and critical care patients. As WAPPS-Hemo is the largest database of individual PK data, a large subgroup of pediatric patients and patients with inhibitors are available for investigation, allowing for analysis of variability in previously unavailable groups. Determining predictors of variability within patient outcome will allow us to improve the current models used to estimate individual PK, resulting in better individual care and use of resources.
Eligibility criteria: All valid data in the WAPPS-Hemo database will be used. All factor concentrates will be included. All available covariates will be analyzed.
Patients: Individuals with hemophilia A or B, any severity, who are registered on WAPPS-Hemo and for whom infusion and/or PK data are available. Both adult and pediatric patients will be included. Patients with history of inhibitors will be included as a separate subgroup.
Available covariates: age, sex, weight, height, dose and type of factor administered (as total and IU/kg), blood group, baseline factor level, positive history of inhibitors, hematocrit, hemoglobin, serum creatinine and laboratory methods used to measure factor VIII and factor IX.
Design: retrospective data analysis
Study database: The WAPPS-Hemo database will be used for the study. WAPPS-Hemo is a web accessible platform developed and run by the Health Information Research Unit (HiRU) at McMaster University. Data have been provided from participating hemophilia treatment centers worldwide to the scope of obtaining individual PK estimates. Data collected are completely anonymized, and re-use of the data for modelling and validation purposes was agreed upon by the inputting physicians, who committed to inform their patients about use of their data for system improvement.
Data extraction procedure: Data will be extracted from the WAPPS-Hemo database after transforming the centre name into a numeric code. The data extracted will include: patient age, sex, weight, height, dose and type of factor administered (as total and IU/kg), blood group, baseline factor level, positive history of inhibitors, hematocrit, hemoglobin, serum creatinine, laboratory methods used to measure factor VIII and factor IX, infused dose, post-infusion measurement of plasma factor activity level, estimated terminal half-life and time to 0.01, 0.02, and 0.05 IU/mL, with their credibility intervals, area under the curve (AUC), central volume, and clearance. Once extracted, the data will be stored in a secure server, located within the local network of the HiRU, protected by a proxy server and firewall.
Data cleaning: Once extracted, the data will be cleaned. Duplicate submissions will be removed, and all original data that has been duplicated from merged infusions will be deleted. Any data not valid for modelling, such as user input errors, insufficient data, or conditions that exclude use of patient data (such as use of inhibitors) will be removed and excluded from analysis. The dataset will be analyzed to search for outliers. Input errors missed at the source will be corrected where the incorrect measurement has been used (i.e. weight, height).
Data Analysis: Multivariate hierarchical analysis will be performed on various factors (age, sex, weight, height, dose and type of factor administered (as total and IU/kg), blood group, baseline factor level, positive history of inhibitors, hematocrit, hemoglobin, and serum creatinine, laboratory methods used to measure factor VIII and factor IX) to explore sources of variability in patient outcome. Significant predictors will be used as covariates in improvement of the model.
- Conditions
- Hemophilia A, Hemophilia B
- Being tested
- Variability in individual PK
- Keywords
- pharmacokinetics, hemophilia, factor VII, factor IX, population pharmacokinetics
- Medical subject headings
- Hemophilia A, Hemophilia B
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
Variability in individual PKOther
Multivariate hierarchical analysis will be performed on various factors (age, sex, weight, height, dose and type of factor administered (as total and IU/kg), blood group, baseline factor level, positive history of inhibitors, hematocrit, hemoglobin, and serum creatinine, laboratory methods used to measure factor VIII and factor IX) to explore sources of variability in patient outcome.
| Study group | Role | What they receive |
|---|---|---|
| Variability in individual PK | Patients with hemophilia A or B, of any severity, who are registered on the web-accessible population pharmacokinetics- hemophilia (WAPPS-Hemo) database, and for whom infusion and/or PK data is available. Receives: Other: Variability in individual PK |
What is being measured
The primary outcome is the main question the study is designed to answer.
Sources of variability in individual pharmacokinetics for factor VII and IX concentrates
Multivariate hierarchical analysis will be performed on various factors (age, sex, weight, height, dose and type of factor administered (as total and IU/kg), blood group, baseline factor level, positive history of inhibitors, hematocrit, hemoglobin, and serum creatinine, laboratory methods used to measure factor VIII and factor IX) to explore sources of variability in patient outcome. Significant predictors will be used as covariates to improve the performance of WAPPS-Hemo models.
Measured: 2 years
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted23 May 2018
- Study start9 May 2018
- Primary completion30 Jun 2024 (estimated)
- Study completion30 Jun 2024 (estimated)
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Publications (2)Papers the sponsor has linked to this study.
- Other trials for Hemophilia AStudies of the same condition, open and under way.
- More trials run by McMaster UniversityThe sponsor's other registered studies.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Observational
- Observational model
- Case only
- Time perspective
- Retrospective
- Enrolment
- 1,000 participants (estimated)
Sponsor and investigators
- Lead sponsor
- McMaster University
- Sponsor type
- University, hospital or other
- Responsible party
- Sponsor
- Investigators
- Alfonso Iorio, Principal investigator, McMaster University
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT03533504
- Sponsor's protocol ID
- 14-601-D
- Acronym
- WAPPS-Hemo
- Status last verified
- Mar 2023
- First submitted
- 10 May 2018
- Last updated
- 15 Mar 2023
- Results posted
- No
- Data monitoring committee
- No
- FDA-regulated drug
- No
- FDA-regulated device
- No
- Individual data sharing
- No
Publications
Hajducek DM, Chelle P, Hermans C, Iorio A, McEneny-King A, Yu J, Edginton A. Development and evaluation of the population pharmacokinetic models for FVIII and FIX concentrates of the WAPPS-Hemo project. Haemophilia. 2020 May;26(3):384-400. doi: 10.1111/hae.13977. Epub 2020 Apr 13.
PubMed 32281726Hajducek DM, Sinkovic O, Chelle P, Iorio A, Edginton A. A Global Cross-Sectional Database Study of Low Dose FVIII SHL Prophylaxis in Haemophilia A. Haemophilia. 2025 Jul;31(4):646-656. doi: 10.1111/hae.70061. Epub 2025 May 10.
PubMed 40347119
Study at a glance
From the registry record, last updated by the sponsor on 15 Mar 2023. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Exploring Sources of Variability in Individual Pharmacokinetics of Factor VIII and IX Concentrates in Hemophilia in the Web Accessible Population Pharmacokinetics Service - Hemophilia (WAPPS-Hemo) Database
- ClinicalTrials.gov ID
- NCT03533504
- Acronym / sponsor ID
- WAPPS-Hemo / 14-601-D
- Conditions
- Hemophilia A, Hemophilia B
- Keywords
- pharmacokinetics, hemophilia, factor VII, factor IX, population pharmacokinetics
- Study type
- Observational
- Recruitment status
- Unknown status
- Enrolment
- 1,000 participants (estimated)
- Lead sponsor
- McMaster UniversityUniversity, hospital or other
- Study start
- 9 May 2018 (actual)
- Primary completion
- 30 Jun 2024 (estimated)
- Study completion
- 30 Jun 2024 (estimated)
- First posted
- 23 May 2018 (actual)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
Using anonymized patient data collected as part of the WAPPS-Hemo project to explore the sources of variability in individual pharmacokinetics (PK); use the sources of variability to improve the performance of the WAPPS-Hemo models through the addition of the predictors of PK variability as covariates.
Detailed description
Innovation and expected results: As the classical PK approach typically requires 11 samples, which can be a burden to the patient, specific subgroups of individuals are often excluded from analysis-including children, elderly and critical care patients. As WAPPS-Hemo is the largest database of individual PK data, a large subgroup of pediatric patients and patients with inhibitors are available for investigation, allowing for analysis of variability in previously unavailable groups. Determining predictors of variability within patient outcome will allow us to improve the current models used to estimate individual PK, resulting in better individual care and use of resources.
Eligibility criteria: All valid data in the WAPPS-Hemo database will be used. All factor concentrates will be included. All available covariates will be analyzed.
Patients: Individuals with hemophilia A or B, any severity, who are registered on WAPPS-Hemo and for whom infusion and/or PK data are available. Both adult and pediatric patients will be included. Patients with history of inhibitors will be included as a separate subgroup.
Available covariates: age, sex, weight, height, dose and type of factor administered (as total and IU/kg), blood group, baseline factor level, positive history of inhibitors, hematocrit, hemoglobin, serum creatinine and laboratory methods used to measure factor VIII and factor IX.
Design: retrospective data analysis
Study database: The WAPPS-Hemo database will be used for the study. WAPPS-Hemo is a web accessible platform developed and run by the Health Information Research Unit (HiRU) at McMaster University. Data have been provided from participating hemophilia treatment centers worldwide to the scope of obtaining individual PK estimates. Data collected are completely anonymized, and re-use of the data for modelling and validation purposes was agreed upon by the inputting physicians, who committed to inform their patients about use of their data for system improvement.
Data extraction procedure: Data will be extracted from the WAPPS-Hemo database after transforming the centre name into a numeric code. The data extracted will include: patient age, sex, weight, height, dose and type of factor administered (as total and IU/kg), blood group, baseline factor level, positive history of inhibitors, hematocrit, hemoglobin, serum creatinine, laboratory methods used to measure factor VIII and factor IX, infused dose, post-infusion measurement of plasma factor activity level, estimated terminal half-life and time to 0.01, 0.02, and 0.05 IU/mL, with their credibility intervals, area under the curve (AUC), central volume, and clearance. Once extracted, the data will be stored in a secure server, located within the local network of the HiRU, protected by a proxy server and firewall.
Data cleaning: Once extracted, the data will be cleaned. Duplicate submissions will be removed, and all original data that has been duplicated from merged infusions will be deleted. Any data not valid for modelling, such as user input errors, insufficient data, or conditions that exclude use of patient data (such as use of inhibitors) will be removed and excluded from analysis. The dataset will be analyzed to search for outliers. Input errors missed at the source will be corrected where the incorrect measurement has been used (i.e. weight, height).
Data Analysis: Multivariate hierarchical analysis will be performed on various factors (age, sex, weight, height, dose and type of factor administered (as total and IU/kg), blood group, baseline factor level, positive history of inhibitors, hematocrit, hemoglobin, and serum creatinine, laboratory methods used to measure factor VIII and factor IX) to explore sources of variability in patient outcome. Significant predictors will be used as covariates in improvement of the model.
Study design
- Observational model
- Case only
- Time perspective
- Retrospective
- Number of arms
- 1
| Arm | Type | Receives |
|---|---|---|
| Variability in individual PK | – | Other: Variability in individual PKPatients with hemophilia A or B, of any severity, who are registered on the web-accessible population pharmacokinetics- hemophilia (WAPPS-Hemo) database, and for whom infusion and/or PK data is available. |
Who may qualify
- Sex
- All
- Healthy volunteers
- Not accepted
- Age groups
- Child, Adult, Older adult
- Study population
- Participates are individuals with hemophilia A or B, any severity, who have agreed to input of their data in the WAPPS-Hemo database, and who have sufficient infusion/PK data.
Key inclusion criteria (3 listed)
- individuals with hemophilia A or B
- infusion/PK data is available on the WAPPS-Hemo database
- given informed consent to data input on the WAPPS-Hemo database
Key exclusion criteria (1 listed)
- individuals currently undergoing immune tolerance induction
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Interventions
| Intervention | Type | Arms |
|---|---|---|
| Variability in individual PKMultivariate hierarchical analysis will be performed on various factors (age, sex, weight, height, dose and type of factor administered (as total and IU/kg), blood group, baseline factor level, positive history of inhibitors, hematocrit, hemoglobin, and serum creatinine, laboratory methods used to measure factor VIII and factor IX) to explore sources of variability in patient outcome. | Other | Variability in individual PK |
Primary outcome
Sources of variability in individual pharmacokinetics for factor VII and IX concentrates
Time frame: 2 years
Multivariate hierarchical analysis will be performed on various factors (age, sex, weight, height, dose and type of factor administered (as total and IU/kg), blood group, baseline factor level, positive history of inhibitors, hematocrit, hemoglobin, and serum creatinine, laboratory methods used to measure factor VIII and factor IX) to explore sources of variability in patient outcome. Significant predictors will be used as covariates to improve the performance of WAPPS-Hemo models.
Results and safety
Results are not available in the source record.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 15 Mar 2023.
- Results publication: PubMed 32281726Hajducek DM, Chelle P, Hermans C, Iorio A, McEneny-King A, Yu J, Edginton A. Development and evaluation of the population pharmacokinetic models for FVIII and FIX concentrates of the WAPPS-Hemo project. Haemophilia. 2020 May;26(3):384-400. doi: 10.1111/hae.13977. Epub 2020 Apr 13.
- Derived from this study: PubMed 40347119Hajducek DM, Sinkovic O, Chelle P, Iorio A, Edginton A. A Global Cross-Sectional Database Study of Low Dose FVIII SHL Prophylaxis in Haemophilia A. Haemophilia. 2025 Jul;31(4):646-656. doi: 10.1111/hae.70061. Epub 2025 May 10.
- WAPPS-Hemo websiteLink provided by the sponsor.
- Individual participant dataSharing planned: No
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Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part. This study is not recruiting at the moment.
Alfonso Iorio principal investigator
McMaster University
1 site in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
An observational study of Hemophilia A and Hemophilia B, run by McMaster University at 1 site in Canada.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 3 inclusion and 1 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: status not confirmed, as of the sponsor's last update on 15 Mar 2023. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 1 site in Canada. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
Results are not available in the source record.
How can a doctor refer a patient or contact the research team?
The record lists no contact. The official record names the sponsor, who can be asked directly. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
Sources of variability in individual pharmacokinetics for factor VII and IX concentrates (time frame: 2 years). It is what the study was designed to measure, not a finding.
Where can I read the original study information?
On the ClinicalTrials.gov record for NCT03533504, which also lists 2 linked publications.
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 15 Mar 2023; AzTrials last refreshed its copy on 7 Nov 2026.