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Hemophilia ASTEPNCT05022459

Prevention of Bleeding in Patients With Moderate and Severe Hemophilia A Playing Sports: A Comparison Between Factor VIII and Emicizumab Prophylaxis

An observational study of Hemophilia A, run by Wayne State University at 10 sites in United States.

Recruiting

Looking for participants now. Contact the study team or a site below to ask about taking part.

Sites and contacts
Official record
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Trial summary

Hemophilia A (HA) is a genetic bleeding disorder resulting from a deficiency or absence of factor VIII (FVIII), which is necessary in the clotting process. This disorder occurs mostly in males and in severe cases causes frequent bleeding episodes in joints and muscles which can lead to progressive damage that affects… Read more about this study

Who is it for?
Ages 6 to 19 years
Conditions the study is for
Hemophilia A
What is being tested?
Emicizumab and FVIII
How many people
72 participants
Where
10 sitesUnited States
Study dates
16 Aug 2023to Mar 2029
Phase
Observational
Are there results?
Not yet: the study is under way

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 6 to 19 years
  • All sexes
  • No healthy volunteers
  • Child, Adult

Study population: This study will enroll patients who are already on Emicizumab or FVIII prophylaxis as per standard of care and who are already participating in sports activities with moderate to high risk of bleeding.

Who may be able to join

  • Participant (if 18 years of age or older) or parent/LAR is willing and able to provide written informed consent; minor participant is willing and able to provide assent, if applicable based on site and local regulations
  • Males and females between 6 to ≤ 19 years of age at time of enrollment with moderate to severe Hemophilia A (FVIII activity ≤ 5%) without inhibitors are eligible for participation in this study
  • Participants must be on Emicizumab or standard FVIII prophylaxis per institutional/primary hematologist recommendations
  • Participants must be engaging in or registered to start participating in one or more sports activities with moderate to high risk of bleeding as defined by the NHF- Playing it Safe guidelines (numerical rating >/= 2).
  • Participant must be willing to keep activity, bleed, and treatment logs for the duration of the study

Who cannot join

  • Participant/parent/LAR unwilling to provide informed consent/assent
  • Unwilling to log or document bleeds and treatment information as per study guidelines
  • Participants with any other bleeding disorders will be excluded
  • Patients who are pregnant, planning to become pregnant, or breastfeeding should not be enrolled in the study
  • Participants on concomittent FVIII replacement and emicizumab for sports participation

Trial locations and contacts

10 sites in 1 country. Contact the study team or a site near you to ask about taking part.

Amy Stolinski, MPH contact

313-577-7500

stepstudy@wayne.edu

10 sites in 1 country

United States10 sites, 10 recruiting
  • Boston Children's Hospital

    Boston, Massachusetts, 02215

    Amy Stolinski, MPH, stepstudy@wayne.edu

    Recruiting
  • Rush University Children's Hospital

    Chicago, Illinois, 60612

    Amy Stolinski, MPH, 313-577-7500, STEPstudy@wayne.edu

    Recruiting
  • Cincinnati Children's Hospital Medical Center

    Cincinnati, Ohio, 45229

    Amy Stolinski, MPH, stepstudy@wayne.edu

    Recruiting
  • Children's Hospital of Michigan

    Detroit, Michigan, 48201

    Amy Stolinski, MPH, STEPStudy@wayne.edu

    Recruiting
  • Indiana Hemophilia & Thrombosis Center

    Indianapolis, Indiana, 46260

    Amy Stolinski, MPH, stepstudy@wayne.edu

    Recruiting
  • Arkansas Children's Hospital

    Little Rock, Arkansas, 72202

    Amy Stolinski, MPH, stepstudy@wayne.edu

    Recruiting
  • Oklahoma Center for Bleeding and Clotting Disorders

    Oklahoma City, Oklahoma, 73104

    Amy Stolinski, MPH, 313-577-7500, STEPstudy@wayne.edu

    Osman Khan, MD

    Recruiting
  • Stanford University

    Palo Alto, California, 94304

    Amy Stolinski, MPH, stepstudy@wayne.edu

    Recruiting
  • Rady Children's Hospital

    San Diego, California, 92123

    Amy Stolinski, MPH, 313-577-7500, STEPstudy@wayne.edu

    Kelly Bush, MD

    Recruiting
  • Johns Hopkins All Children's Hospital

    St. Petersburg, Florida, 33701

    Amy Stolinski, MPH, stepstudy@wayne.edu

    Recruiting

Other trials in United States

About this study

Official title: Prevention of Bleeding in Patients With Moderate and Severe Hemophilia A Playing Sports: A Comparison Between Factor VIII and Emicizumab Prophylaxis -STEP: SporTs Emicizumab Prophylaxis

Hemophilia A (HA) is a genetic bleeding disorder resulting from a deficiency or absence of factor VIII (FVIII), which is necessary in the clotting process. This disorder occurs mostly in males and in severe cases causes frequent bleeding episodes in joints and muscles which can lead to progressive damage that affects mobility and quality of life. Prophylactic FVIII administered intravenously every other day has been the standard of care treatment for HA for the past few decades.

Sports and physical activity are generally encouraged in patients with hemophilia on appropriate prophylactic treatment to increase strength, prevent or decrease obesity, accrue and maintain bone density and encourage normal socialization. To ensure safety with participation in sports in persons with hemophilia A (PWHA), timing of FVIII administration is often adjusted to maximize FVIII at the time of sports. The exact factor level that is needed to safely participate in sports and minimize bleeding risk is not yet known. Based on clinical practice, infusion of FVIII to near the lower limit of normal right before participation in sports generally works to prevent bleeding.

The study is looking at how well the newly approved medication Emicizumab works compared to Factor VIII to prevent bleeding in patients with Hemophilia A who play sports. The study will enroll children and adolescents who are already on Emicizumab or Factor VIII who are currently playing sports.

Read the detailed description

Hemophilia A (HA) is a genetic bleeding disorder resulting from a deficiency or absence of factor VIII (FVIII) which is necessary in the clotting process. This disorder occurs mostly in males and in severe cases causes frequent bleeding episodes in joints and muscles which can lead to progressive damage that affects mobility and quality of life. Intravenous prophylactic (preventative) treatment is the standard of care used in minimizing bleeding events and complications. Since the 1990s recombinant FVIII (rFVIII) concentrates have been standard of care treatment options for patients with hemophilia A. Prophylactic treatment is burdensome because it requires self-administered intravenous infusions several (3-4) times a week and prophylactic FVIII does not completely prevent bleeding.

Sports and physical activity are generally encouraged in patients with hemophilia on appropriate prophylactic treatment to increase strength, prevent or decrease obesity, accrue and maintain bone density and encourage normal socialization. To ensure safety with participation in sports in persons with hemophilia A (PWHA), timing of FVIII administration is frequently adjusted to maximize FVIII at the time of sports. The exact factor level that is needed to safely participate in sports and minimize bleeding risk is not yet known. Based on clinical practice, infusion of FVIII to near the lower limit of normal right before participation in sports generally works to prevent bleeding.

Emicizumab is an engineered antibody that mimics what activated factor VIII does in the blood to help it clot. Emicizumab is an antibody and is present in the blood for a long time and approximately 50% of an injected dose is still circulating in the blood 4 weeks later; this permits less frequent dosing (Anywhere from once a week to once every 4 weeks). Emicizumab can be injected under the skin (subcutaneous) instead of having to be injected into a vein (intravenous). Emicizumab's convenience compared to FVIII, reduced bleeding rate, and in many cases decreased annual cost, have led to its adoption by many patients with HA. Emicizumab does not completely normalize hemostasis (the physiological process that stops bleeding) and although the exact comparison of hemostatic correction on maintenance doses of Emicizumab to that with FVIII replacement cannot be determined with existing assays, it has been clinically demonstrated that Emicizumab changes the bleeding characteristics of a patient with severe hemophilia A to a milder profile. While this may provide sufficient protection to prevent spontaneous bleeding into the joints, it remains unknown if this is sufficient to prevent activity/sports related joint bleeds (especially activities with moderate to high risk of bleeding).

A disadvantage of Emicizumab prophylaxis is that the steady state produced with Emicizumab prophylaxis does not allow dosing at the time of sports participation. One major question is whether the "steady state" levels of hemostasis achieved with Emicizumab are enough to prevent joint damage with sports participation, and whether there is a threshold of participant age or size or activity intensity above which Emicizumab is not generally adequate.

Emicizumab use permits maintenance of "steady state" hemostasis in the range of mild hemophilia without frequent infusions. Studying patients taking Emicizumab while engaging in sports permits us to study the effects of participation in physical activity with steady state hemostasis levels in the range of mild hemophilia compared to peak hemostatic levels from factor infusions given immediately before engaging in activity/sports. This is a crucial factor in the decision-making process for physicians making treatment recommendations to optimize preventive therapy for physically active people with hemophilia A.

The purpose of this investigator-initiated study is to better understand the safety of sports in people with Hemophilia A, the breakthrough bleed rates, and the types of bleeds related to sports activities in patients on Emicizumab vs traditional FVIII prophylaxis. This information will help in the decision-making process for physicians making treatment recommendations for physically active people with hemophilia A.

Conditions
Hemophilia A
Being tested
Emicizumab, FVIII
Medical subject headings
Hemophilia A

What participants receive

What participants receive. In a randomised study each person is assigned to one group by chance.

  • EmicizumabDrug

    Patients in this group will be on standard of care Emicizumab prophylaxis for Hemophilia A

  • FVIIIDrug

    Patients in this group will be on standard of care FVIII prophylaxis for Hemophilia A

Study groups in NCT05022459
Study groupRoleWhat they receive
Emicizumab ProphylaxisThis group will include patients on standard of care Emicizumab prophylaxis for Hemophilia A
Receives: Drug: Emicizumab
FVIII ProphylaxisThis group will include patients on standard of care FVIII prophylaxis for Hemophilia A
Receives: Drug: FVIII

What is being measured

The primary outcome is the main question the study is designed to answer.

  1. Number of bleeds

    Number of bleeds without trauma, during participation in sports activities

    Measured: 2 years

Secondary outcomes (5)
  1. Change in HJHS scores

    Change in Hemophilia Joint Health Scores (HJHS). The HJHS provides a total score (higher score is worse; max=124), joint specific scores, and a global gait score.

    Measured: 2 years

  2. Change in bone mineral density

    Change in bone mineral density as measured by DEXA Scan

    Measured: 2 years

  3. Change in biomarkers of bone and joint health

    Change in biomarkers of bone and joint health as measured by (sRANKL (osteoclastogenesis), CTX-1 (Bone resorption), CS846 (cartilage repair) and IL-1 beta, IL6 and TNF-alpha (markers of inflammation).

    Measured: 2 years

  4. Number of FVIII doses for breakthrough bleeding episodes

    Number of doses of factor needed to treat breakthrough bleeding episodes

    Measured: 2 years

  5. MRI changes in relevant joints

    MRI changes in relevant joints (The joint to be imaged will be determined based on the sport activity; joints most involved in the activity will be imaged).

    Measured: 2 years

Timeline

From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.

  1. First posted26 Aug 2021
  2. Study start16 Aug 2023
  3. Primary completionJan 2029 (estimated)
  4. Study completionMar 2029 (estimated)

Resources

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
Cohort
Time perspective
Prospective
Enrolment
72 participants (estimated)
IDs, dates and publications
ClinicalTrials.gov ID
NCT05022459
Sponsor's protocol ID
STEP Study
Acronym
STEP
Status last verified
Jun 2026
First submitted
23 Aug 2021
Last updated
2 Jul 2026
Results posted
No
Data monitoring committee
No
FDA-regulated drug
Yes
FDA-regulated device
No
Individual data sharing
No

Questions about this trial

What is this clinical trial studying?

An observational study of Hemophilia A, run by Wayne State University at 10 sites in United States.

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 5 inclusion and 5 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: looking for participants now, as of the sponsor's last update on 2 Jul 2026. Status can change between updates, so confirm with the study contact before making plans.

Where is the study taking place?

The record lists 10 sites in United States. 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?

This study is still under way. Results are not available in the source record yet.

How can a doctor refer a patient or contact the research team?

Contact Amy Stolinski, MPH (313-577-7500, stepstudy@wayne.edu), or a site near the patient. AzTrials does not enrol participants or take referrals.

What does the primary outcome measure?

Number of bleeds (time frame: 2 years). It is what the study was designed to measure, not a finding.

Where can I read the original study information?
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 2 Jul 2026.

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