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

14 December 2017

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

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6

Richard R Sharp

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5

Sharon F Terry

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David C Landy

1

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Margaret A Brinich

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2

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14 December 2017

Mary Ellen Colten

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3

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14 December 2017

Elizabeth J Horn

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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

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2

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223-228

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https://scigraph.springernature.com/pub.10.1038/gim.0b013e3182310ba0

14 December 2017

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Clinical trials for rare lung diseases: lessons from lymphangioleiomyomatosis.

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Biology, risk stratification, and therapy of pediatric acute leukemias: an update

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Drug development for orphan diseases in the context of personalized medicine

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Power to the people: participant ownership of clinical trial data

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Orphan drug development is not taking off.

21 January 2018

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A model program to increase translation of rare disease genetic tests: collaboration, education, and test translation program

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"Creating hope" and other incentives for drug development for children

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Advocacy groups as research organizations: the PXE International example

21 January 2018

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

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Researching the biology of PXE: partnering in the process.

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Advocacy groups and their role in rare diseases research

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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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Applying community-based participatory research principles and approaches in clinical trials: forging a new model for cancer clinical research.

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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A journey of hope: lessons learned from studies on rare diseases and orphan drugs

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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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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

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

7 January 2021

10.1038/GIM.0B013E3182310BA0

Identifiers

DOI

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Dimensions Publication ID

14 December 2017

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