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Patients’ organizations in rare diseases and involvement in drug information: Illustrations with LMC France, the French Association of Chronic Myeloid leukemia

Autor: Mina Daban, Clémence Lacroix, Joëlle Micallef

Publikováno v: Thérapie
Thérapie, EDP Sciences-Depuis 2016, la revue Thérapie n’est plus publiée par EDP Sciences.> Therapies (Elsevier), 2020, 75 (2), pp.221-224. ⟨10.1016/j.therap.2020.02.014⟩

There are few areas in medicine in which patient-parent advocacy groups play such a central and prominent role as in the field of rare diseases. As illustrated by the French Association of Chronic Myeloid Leukemia (LMC France), its contribution is no

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::a8133e04e21de43cf4e21b9623d9f2b7
https://hal.archives-ouvertes.fr/hal-03620947

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Treatment-free remission in chronic myeloid leukemia: the patient perspective and areas of unmet needs

Autor: Felice Bombaci, Nigel B. Deekes, Jennifer A. Bradley, Bahija Gouimi, Jan Geissler, Zack Pemberton-Whiteley, Rita I O Christensen, Giora Sharf, Celia Marin, Mina Daban

Publikováno v: Leukemia

In CML, treatment-free remission (TFR) refers to having a stable deep molecular response without the need for ongoing tyrosine kinase inhibitor treatment. Whilst recommendations exist about the technical management of stopping and re-starting therapy

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::ea9700ffc95a2d7dba5ded08e18dd5ab
https://pubmed.ncbi.nlm.nih.gov/32457354

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Factors influencing adherence in CML and ways to improvement: Results of a patient-driven survey of 2546 patients in 63 countries

Autor: Verena S. Hoffmann, Tony Gavin, Jan Geissler, Jana Pelouchova, Felice Bombaci, Jan de Jong, Euzebiusz J Dziwinski, Joerg Hasford, Mina Daban, Giora Sharf

Publikováno v: Journal of cancer research and clinical oncology. 143(7)

Optimal adherence to CML therapy is of key importance to maximize treatment effectiveness. Two clinical studies (ADAGIO and Hammersmith) have proven a clear correlation between adherence and achieving optimal treatment response and have revealed that

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::8db957a1aa6d022e50f1b25342d0c59f
https://pubmed.ncbi.nlm.nih.gov/28289895

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CML Patients' Views on Psychological Support throughout the Treatment-Free Remission Journey

Autor: Andreas Hochhaus, Jan Geissler, Bahija Gouimi, Jennie Bradley, Zack Pemberton-Whiteley, Celia Marin, Nigel B. Deekes, Rita I O Christensen, Giora Sharf, Mina Daban, Felice Bombaci

Publikováno v: Blood. 134:2934-2934

Background In Chronic Myeloid Leukemia (CML), Treatment-free Remission (TFR) refers to having a stable deep molecular response without the need for ongoing Tyrosine Kinase Inhibitor (TKI) treatment. While first recommendations exist about how to mana

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_________::708ad6c7ca51688eeb316bc24871e60e
https://doi.org/10.1182/blood-2019-123942

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Factors Predicting Intentional Non-Adherence In Chronic Myeloid Leukemia: A Multivariate Analysis On 2546 Patients By The CML Advocates Network

Autor: Giora Sharf, Jana Pelouchova, Felice Bombaci, Jan de Jong, Anthony Michael Gavin, Fabio Efficace, Mina Daban, Francesco Cottone, Jan Geissler, Euzebiusz J Dziwinski, Joelle Guilhot

Publikováno v: Blood. 122:4023-4023

Background Adherence to the prescribed dose of tyrosine kinase inhibitors (TKIs) is critical to maximize treatment effectiveness in chronic myeloid leukemia (CML). While patient-centered outcome studies are lacking in this area, literature has shown

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_________::3ba4c1d4a0bd2fa90b24751f35f16529
https://doi.org/10.1182/blood.v122.21.4023.4023

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