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The Journal of Haemophilia Practice
Volume 9 (2022): Numero 1 (January 2022)
Accesso libero
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
,
Nabil Daoud
Nabil Daoud
,
Moses Miles
Moses Miles
,
Carrie O'Neill
Carrie O'Neill
,
Crystal Watson
Crystal Watson
e
Michael Recht
Michael Recht
| 03 gen 2023
The Journal of Haemophilia Practice
Volume 9 (2022): Numero 1 (January 2022)
INFORMAZIONI SU QUESTO ARTICOLO
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Article Category:
Clinical Research
Pubblicato online:
03 gen 2023
Pagine:
147 - 155
DOI:
https://doi.org/10.2478/jhp-2022-0020
Parole chiave
Haemophilia A
,
Haemophilia B
,
Therapeutics
,
Safety
,
Effectiveness
,
Natural history
© 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
Figure 1
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.
Figure 3
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