How disease advocacy organizations participate in clinical research: a survey of genetic organizations (Q45594506)

14 December 2017

title

How disease advocacy organizations participate in clinical research: a survey of genetic organizations (English)

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14 December 2017

6

Richard R Sharp

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14 December 2017

5

Sharon F Terry

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14 December 2017

David C Landy

1

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14 December 2017

Margaret A Brinich

series ordinal

2

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14 December 2017

Mary Ellen Colten

series ordinal

3

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14 December 2017

Elizabeth J Horn

series ordinal

4

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14 December 2017

language of work or name

English

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publication date

1 February 2012

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14 December 2017

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14 December 2017

volume

14

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14 December 2017

issue

2

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14 December 2017

page(s)

223-228

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Discovery of rare variants via sequencing: implications for the design of complex trait association studies

14 December 2017

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Orphan drug development is not taking off.

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Advocacy groups as research organizations: the PXE International example

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Gene patenting and licensing: the role of academic researchers and advocacy groups

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From representation to mediation: the shaping of collective mobilization on muscular dystrophy in France

21 January 2018

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The role of patient advocacy organisations in neuromuscular disease R&D--The case of the Dutch neuromuscular disease association VSN.

21 January 2018

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21 January 2018

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Predictors for clinical trial participation in the rare lung disease lymphangioleiomyomatosis

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Examining the potential for exploitation by local intermediaries

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Prognosis of pulmonary arterial hypertension: the power of clinical registries of rare diseases

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7 January 2021

Accrual to cancer clinical trials in the era of molecular medicine

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7 January 2021

Emergence of orphan drugs in the United States: a quantitative assessment of the first 25 years

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7 January 2021

The financing of clinical genetics research by disease advocacy organizations: A review of funding disclosures in biomedical journals

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7 January 2021

Genetic Alliance Registry and BioBank: a novel disease advocacy-driven research solution

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7 January 2021

The common problem of rare disease in general practice

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7 January 2021

Creating partnerships and improving health care: the role of genetic advocacy groups

1 reference

https://api.crossref.org/works/10.1038%2FGIM.0B013E3182310BA0

7 January 2021

10.1038/GIM.0B013E3182310BA0

Identifiers

DOI

1 reference

Dimensions Publication ID

14 December 2017

1051934714

0 references

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