Original language | English |
---|---|
Pages (from-to) | 357-361 |
Number of pages | 5 |
Journal | Haemophilia |
Volume | 29 |
Issue number | 1 |
Early online date | 2022 |
DOIs | |
Publication status | Published - 29 Jan 2023 |
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In: Haemophilia, Vol. 29, No. 1, 29.01.2023, p. 357-361.
Research output: Contribution to journal › Article › Academic › peer-review
TY - JOUR
T1 - Harmonizing patient-reported outcome measurements in inherited bleeding disorders with PROMIS
AU - van Hoorn, Evelien S.
AU - Teela, Lorynn
AU - Kuijlaars, Isolde A. R.
AU - Fischer, Kathelijn
AU - Gouw, Samantha C.
AU - for SYMPHONY consortium and Dutch research group for PROMIS implementation in inherited bleeding disorders
AU - Cnossen, Marjon H.
AU - Haverman, Lotte
N1 - Funding Information: The SYMPHONY consortium, which aims to orchestrate personalized treatment in patients with bleeding disorders, is a unique collaboration between patients, health care professionals and translational and fundamental researchers specialized in inherited bleeding disorders, as well as experts from multiple disciplines. SYMPHONY aims to identify best treatment choice for each individual based on bleeding phenotype. In order to achieve this goal, workpackages have been organized according to three themes e.g. Diagnostics (workpackage 3&4), Treatment (workpackages 5–9) and Fundamental Research (workpackages 10–12). This research received funding from the Netherlands Organization for Scientific Research (NWO) in the framework of the NWA-ORC Call grant agreement NWA.1160.18.038. Principal investigator: Dr M.H. Cnossen. Beneficiaries of the SYMPHONY consortium: Erasmus MC – Sophia Children's Hospital, University Medical Center Rotterdam, project leadership and coordination; Sanquin Diagnostics; Sanquin Research; Amsterdam University Medical Centers; University Medical Center Groningen; University Medical Center Utrecht; Leiden University Medical Center; Radboud University Medical Center; Netherlands Society of Hemophilia Patients (NVHP); Netherlands Society for Thrombosis and Hemostasis (NVTH); Bayer B.V., CSL Behring B.V., Swedish Orphan Biovitrum (Belgium) BVBA/SPRL. The Dutch research group for PROMIS implementation in inherited bleeding disorders aims to research the feasibility, reliability and validity of Dutch PROMIS item banks in children and adults with inherited bleeding disorders. We would like to thank our colleagues Marjolein Peters, Michiel Coppens, Hester F. Lingsma, Marieke J.H.A. Kruip, Lize F.D. van Vulpen & Tessa C.M. van Gastel for their contribution to the Dutch research group for PROMIS implementation in inherited bleeding disorders. Funding Information: The SYMPHONY consortium, which aims to orchestrate personalized treatment in patients with bleeding disorders, is a unique collaboration between patients, health care professionals and translational and fundamental researchers specialized in inherited bleeding disorders, as well as experts from multiple disciplines. SYMPHONY aims to identify best treatment choice for each individual based on bleeding phenotype. In order to achieve this goal, workpackages have been organized according to three themes e.g. Diagnostics (workpackage 3&4), Treatment (workpackages 5–9) and Fundamental Research (workpackages 10–12). This research received funding from the Netherlands Organization for Scientific Research (NWO) in the framework of the NWA‐ORC Call grant agreement NWA.1160.18.038. Principal investigator: Dr M.H. Cnossen. Beneficiaries of the SYMPHONY consortium: Erasmus MC – Sophia Children's Hospital, University Medical Center Rotterdam, project leadership and coordination; Sanquin Diagnostics; Sanquin Research; Amsterdam University Medical Centers; University Medical Center Groningen; University Medical Center Utrecht; Leiden University Medical Center; Radboud University Medical Center; Netherlands Society of Hemophilia Patients (NVHP); Netherlands Society for Thrombosis and Hemostasis (NVTH); Bayer B.V., CSL Behring B.V., Swedish Orphan Biovitrum (Belgium) BVBA/SPRL.
PY - 2023/1/29
Y1 - 2023/1/29
UR - http://www.scopus.com/inward/record.url?scp=85142269629&partnerID=8YFLogxK
U2 - https://doi.org/10.1111/hae.14694
DO - https://doi.org/10.1111/hae.14694
M3 - Article
C2 - 36395776
SN - 1351-8216
VL - 29
SP - 357
EP - 361
JO - Haemophilia
JF - Haemophilia
IS - 1
ER -