Harmonizing patient-reported outcome measurements in inherited bleeding disorders with PROMIS

Evelien S. van Hoorn; Lorynn Teela; for SYMPHONY consortium and Dutch research group for PROMIS implementation in inherited bleeding disorders; Isolde A.R. Kuijlaars; Kathelijn Fischer; Samantha C. Gouw; Marjon H. Cnossen; Lotte Haverman

doi:10.1111/hae.14694

Harmonizing patient-reported outcome measurements in inherited bleeding disorders with PROMIS

Evelien S. van Hoorn^*, Lorynn Teela, for SYMPHONY consortium and Dutch research group for PROMIS implementation in inherited bleeding disorders, Isolde A.R. Kuijlaars, Kathelijn Fischer, Samantha C. Gouw, Marjon H. Cnossen, Lotte Haverman

^*Corresponding author for this work

Research output: Contribution to journal › Comment/Letter to the editor › Academic › peer-review

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Original language	English
Journal	Haemophilia
DOIs	https://doi.org/10.1111/hae.14694
Publication status	E-pub ahead of print - 17 Nov 2022

Bibliographical note

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.

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@article{728c93bc741a4e54b0ba63af17af40a6,

title = "Harmonizing patient-reported outcome measurements in inherited bleeding disorders with PROMIS",

author = "{van Hoorn}, {Evelien S.} and Lorynn Teela and {for SYMPHONY consortium and Dutch research group for PROMIS implementation in inherited bleeding disorders} and Kuijlaars, {Isolde A.R.} and Kathelijn Fischer and Gouw, {Samantha C.} and Cnossen, {Marjon H.} and Lotte Haverman",

note = "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. ",

year = "2022",

month = nov,

day = "17",

doi = "10.1111/hae.14694",

language = "English",

journal = "Haemophilia",

issn = "1351-8216",

publisher = "Wiley-Blackwell Publishing Ltd",

}

Harmonizing patient-reported outcome measurements in inherited bleeding disorders with PROMIS. / van Hoorn, Evelien S.; Teela, Lorynn; for SYMPHONY consortium and Dutch research group for PROMIS implementation in inherited bleeding disorders et al.

In: Haemophilia, 17.11.2022.

Research output: Contribution to journal › Comment/Letter to the editor › 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 - for SYMPHONY consortium and Dutch research group for PROMIS implementation in inherited bleeding disorders

AU - Kuijlaars, Isolde A.R.

AU - Fischer, Kathelijn

AU - Gouw, Samantha C.

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.

PY - 2022/11/17

Y1 - 2022/11/17

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U2 - 10.1111/hae.14694

DO - 10.1111/hae.14694

M3 - Comment/Letter to the editor

C2 - 36395776

AN - SCOPUS:85142269629

JO - Haemophilia

JF - Haemophilia

SN - 1351-8216

ER -

Harmonizing patient-reported outcome measurements in inherited bleeding disorders with PROMIS

Bibliographical note

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