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Access to medicines for rare diseases: beating the drum for primary ciliary dyskinesia [editorial].

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cris.virtualsource.author-orcid3857e2d3-2b7f-42b6-878d-ce868ac1673c
dc.contributor.authorCrowley, Suzanne
dc.contributor.authorAzevedo, Inês
dc.contributor.authorBoon, Mieke
dc.contributor.authorBush, Andrew
dc.contributor.authorEber, Ernst
dc.contributor.authorHaarman, Eric
dc.contributor.authorKaradag, Bulent
dc.contributor.authorKötz, Karsten
dc.contributor.authorLeigh, Margaret
dc.contributor.authorMoreno-Galdó, Antonio
dc.contributor.authorMussaffi, Huda
dc.contributor.authorNielsen, Kim G
dc.contributor.authorOmran, Heymut
dc.contributor.authorPapon, Jean-François
dc.contributor.authorPohunek, Petr
dc.contributor.authorPriftis, Kostas
dc.contributor.authorRindlisbacher, Bernhard
dc.contributor.authorSantamaria, Francesca
dc.contributor.authorValiulis, Arunas
dc.contributor.authorWitt, Michal
dc.contributor.authorYiallouros, Panayiotis
dc.contributor.authorZivkovic, Zorica
dc.contributor.authorKühni, Claudia
dc.contributor.authorLucas, Jane S
dc.date.accessioned2024-10-05T11:51:18Z
dc.date.available2024-10-05T11:51:18Z
dc.date.issued2020-07
dc.description.abstractPrimary ciliary dyskinesia, a rare disease causing bronchiectasis, lacks a sound evidence base for treatment. @beatpcd proposes 1) forming a PCD European clinical trial network to address this situation and 2) conducting n-of-1 trials to access medication. https://bit.ly/3j5blfM.
dc.description.numberOfPages5
dc.description.sponsorshipInstitut für Sozial- und Präventivmedizin (ISPM)
dc.identifier.doi10.7892/boris.146860
dc.identifier.pmid32964005
dc.identifier.publisherDOI10.1183/23120541.00377-2020
dc.identifier.urihttps://boris-portal.unibe.ch/handle/20.500.12422/55399
dc.language.isoen
dc.publisherEuropean Respiratory Society
dc.relation.ispartofERJ Open Research
dc.relation.issn2312-0541
dc.relation.organizationDCD5A442BADAE17DE0405C82790C4DE2
dc.relation.organizationDCD5A442BECFE17DE0405C82790C4DE2
dc.relation.organizationDCD5A442C249E17DE0405C82790C4DE2
dc.subject.ddc600 - Technology::610 - Medicine & health
dc.subject.ddc300 - Social sciences, sociology & anthropology::360 - Social problems & social services
dc.titleAccess to medicines for rare diseases: beating the drum for primary ciliary dyskinesia [editorial].
dc.typearticle
dspace.entity.typePublication
dspace.file.typetext
oaire.citation.endPage2020
oaire.citation.issue3
oaire.citation.startPage00377
oaire.citation.volume6
oairecerif.author.affiliationInstitut für Sozial- und Präventivmedizin (ISPM)
oairecerif.author.affiliation2Universitätsklinik für Kinderheilkunde
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unibe.date.licenseChanged2020-10-15 19:05:53
unibe.description.ispublishedpub
unibe.eprints.legacyId146860
unibe.journal.abbrevTitleERJ Open Res
unibe.refereedTRUE
unibe.subtype.articlecontribution

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