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Designing ATHN 7: Safety, effectiveness and practice of treatment of people with haemophilia in the United States through a natural history cohort study

Tyler W. Buckner

Tyler W. Buckner

Hemophilia and Thrombosis Center, University of Colorado School of MedicineAurora, United States
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Buckner, Tyler W.
, 
Nabil Daoud

Nabil Daoud

American Thrombosis and Hemostasis NetworkRochester, United States
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Daoud, Nabil
, 
Moses Miles

Moses Miles

American Thrombosis and Hemostasis NetworkRochester, United States
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Miles, Moses
, 
Carrie O'Neill

Carrie O'Neill

American Thrombosis and Hemostasis NetworkRochester, United States
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O'Neill, Carrie
, 
Crystal Watson

Crystal Watson

American Thrombosis and Hemostasis NetworkRochester, United States
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Watson, Crystal
 and 
Michael Recht

Michael Recht

American Thrombosis and Hemostasis NetworkRochester, United States
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Recht, Michael
  
Jan 03, 2023
Designing ATHN 7: Safety, effectiveness and practice of treatment of people with haemophilia in the United States through a natural history cohort study's Cover Image
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Article Category: Clinical Research
Published Online: Jan 03, 2023
Page range: 147 - 155
DOI: https://doi.org/10.2478/jhp-2022-0020
Keywords
© 2022 Tyler W. Buckner et al., published by Sciendo
This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 3.0 License.
The American Thrombosis and Hemostasis Network (ATHN) is building a comprehensive dataset on treatment safety, effectiveness, regimens, target joints, and patient-reported outcomes for people with haemophilia in the United States
The American Thrombosis and Hemostasis Network (ATHN) is building a comprehensive dataset on treatment safety, effectiveness, regimens, target joints, and patient-reported outcomes for people with haemophilia in the United States

Figure 1

ATHN 7 schedule of eventsAE: Adverse event PRO: Patient-reported outcome
ATHN 7 schedule of eventsAE: Adverse event PRO: Patient-reported outcome

Figure 2

ATNH 7 accrualActual versus projected accrual into ATHN 7. The shaded area represents the onset of the COVID-19 pandemic and the decision to pause accrual into ATHN 7 with the planned transition of participants into ATHN Transcends.
ATNH 7 accrualActual versus projected accrual into ATHN 7. The shaded area represents the onset of the COVID-19 pandemic and the decision to pause accrual into ATHN 7 with the planned transition of participants into ATHN Transcends.

Figure 3

List of participating HTCs and accruals by site
List of participating HTCs and accruals by site

Patient-reported outcomes data collected from participants (or parent proxies) at enrolment in ATHN 7

AGE OF PARTICIPANT (YEARS) 0–4 5–7 8–11 12–17 >18
EQ-5D-5L X X
PROMIS-29 X
PROMIS-25 X X
PROMIS-25 parent proxy X
GAR X X
GAR parent proxy X X X
Language:
English
Publication timeframe:
1 times per year
Journal Subjects:
Medicine, Basic Medical Science, Basic Medical Science, other, Clinical Medicine, Clinical Medicine, other, Pharmacy, Pharmacology
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