Advocacy groups as research organizations: the PXE International example
about
New phosphate langbeinites, K2MTi(PO4)3 (M = Er, Yb or Y), and an alternative description of the langbeinite frameworkWithin and beyond the communal turn to informed consent in industry-sponsored pharmacogenetics research: merits and challenges of community advisory boardsBroad Consent for Research With Biological Samples: Workshop ConclusionsConsent and community engagement in diverse research contextsDisentangling public participation in science and biomedicineBiobanking: The Melding of Research with Clinical CarePlanning for translational research in genomicsA wiki for the life sciences where authorship mattersDisease advocacy organizations catalyze translational research.Data monitoring committees for pragmatic clinical trials.A qualitative study on acceptable levels of risk for pregnant women in clinical research.Costello and cardio-facio-cutaneous syndromes: Moving toward clinical trials in RASopathies.Meeting the governance challenges of next-generation biorepository research.The challenges of collaboration for academic and community partners in a research partnership: points to consider.'Information is information': a public perspective on incidental findings in clinical and research genome-based testingEthical, legal, social, and policy implications of behavioral genetics.Commentary: a sociologist's view on community genetics.The "technoscientization" of medicine and its limits: technoscientific identities, biosocialities, and rare disease patient organizations.Pseudoxanthoma elasticum, the paradigm of heritable ectopic mineralization disorders - can diet help?New Recommendation on Biological Materials Could Hamper Muscular Dystrophy Research.A critique of the regulation of data science in healthcare research in the European Union.Patient and Stakeholder Engagement in the PCORI Pilot Projects: Description and Lessons Learned.From invited to uninvited participation (and back?): rethinking civil society engagement in technology assessment and developmentThe involvement of patient organisations in rare disease research: a mixed methods study in Australia.Pediatric biobanks: approaching informed consent for continuing research after children grow up.Warfarin accelerates ectopic mineralization in Abcc6(-/-) mice: clinical relevance to pseudoxanthoma elasticumUnderstanding incidental findings in the context of genetics and genomics.Frontotemporal dementia caregivers and researchers: partnering for brain donation.Gene patenting and licensing: the role of academic researchers and advocacy groups.Expectations and experiences of investigators and parents involved in a clinical trial for Duchenne/Becker muscular dystrophy.Needs and Requirements of Modern Biobanks on the Example of Dystonia Syndromes.Focusing on Cause or Cure?: Priorities and Stakeholder Presence in Childhood Psychiatry Research.An end to the myth: there is no drug development pipeline.The role of brain tumor advocacy groups.Involving patients in reducing decision uncertainties around orphan and ultra-orphan drugs: a rare opportunity?Translating rare-disease therapies into improved care for patients and families: what are the right outcomes, designs, and engagement approaches in health-systems research?Genetic counseling, activism and 'genotype-first' diagnosis of developmental disorders.ABCC6 and Pseudoxanthoma Elasticum: The Face of a Rare Disease from Genetics to Advocacy.Addressing Deficits and Injustices: The Potential Epistemic Contributions of Patients to Research.The contractual genome: how direct-to-consumer genomic services may help patients take ownership of their DNA.
P2860
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P2860
Advocacy groups as research organizations: the PXE International example
description
2007 nî lūn-bûn
@nan
2007 թուականի Փետրուարին հրատարակուած գիտական յօդուած
@hyw
2007 թվականի փետրվարին հրատարակված գիտական հոդված
@hy
2007年の論文
@ja
2007年論文
@yue
2007年論文
@zh-hant
2007年論文
@zh-hk
2007年論文
@zh-mo
2007年論文
@zh-tw
2007年论文
@wuu
name
Advocacy groups as research organizations: the PXE International example
@ast
Advocacy groups as research organizations: the PXE International example
@en
Advocacy groups as research organizations: the PXE International example
@nl
type
label
Advocacy groups as research organizations: the PXE International example
@ast
Advocacy groups as research organizations: the PXE International example
@en
Advocacy groups as research organizations: the PXE International example
@nl
prefLabel
Advocacy groups as research organizations: the PXE International example
@ast
Advocacy groups as research organizations: the PXE International example
@en
Advocacy groups as research organizations: the PXE International example
@nl
P2093
P356
P1476
Advocacy groups as research organizations: the PXE International example
@en
P2093
Katherine A Rauen
Lionel G Bercovitch
Patrick F Terry
P2888
P304
P356
10.1038/NRG1991
P407
P577
2007-02-01T00:00:00Z
P5875
P6179
1053043739