Patient Functioning and Well-being, Economic, and Clinical Impact of Hemophilia A and Its Treatment



Status:Completed
Conditions:Anemia, Hematology
Therapuetic Areas:Hematology
Healthy:No
Age Range:16 - Any
Updated:3/29/2019
Start Date:December 9, 2015
End Date:March 26, 2018

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A Prospective, International, Longitudinal, Observational Disease Registry of Patient-reported Outcomes (PROs) and the Association With Hemophilia A and Its Treatment in Patients With Moderate to Severe Hemophilia A

The purpose of the study is to improve the understanding of key patient reported outcomes
such as quality of life as well as clinical outcomes in hemophilia A, in a global real world
setting.


Inclusion Criteria:

- Age 16 or over.

- Have documentation of physician-confirmed diagnosis of moderate or severe Hemophilia A
(severity defined as moderate = FVIII activity 1% to 5% and severe = FVIII activity
≤1%).

- Signed written informed consent provided by the patient or the patient's parents for
patients under the age of 18 (dependent of local regulations).

- Signed written assent is also required for patients under the age 18 years (dependent
on local regulations).

- Plan to receive at least half of their Hemophilia care at the registry site.

- Willing and able to enter data as per the data collection schedule.

- Currently receiving prophylactic or on demand treatment (including within last 6months
for on demand).

- Expected life expectancy of at least 2 years.

Exclusion Criteria:

- Patients with Hemophilia B

- Patients with von Willebrand disease (vWD)

- Patients with other rare bleeding disorders

- Unable to comply with the study protocol
We found this trial at
8
sites
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Washington,
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Aurora, CO
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Minneapolis, MN
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1304 North Wood Street
Multiple Locations, 60622
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