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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.
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Nabil Daoud

Nabil Daoud

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

Moses Miles

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

Carrie O'Neill

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

Crystal Watson

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

Michael Recht

American Thrombosis and Hemostasis NetworkRochester, United States
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Recht, Michael
  
03 gen 2023
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Categoria dell'articolo: Clinical Research
Pubblicato online: 03 gen 2023
Pagine: 147 - 155
DOI: https://doi.org/10.2478/jhp-2022-0020
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© 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
Lingua:
Inglese
Frequenza di pubblicazione:
1 volte all'anno
Argomenti della rivista:
Medicina, Scienze medicali di base, Scienze medicali di base, altro, Medicina clinica, Medicina clinica, altro, Farmacia, Farmacologia
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