(Q45594506)

14 December 2017

title

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

1 reference

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

1 reference

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

1 reference

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

14 December 2017

exact match

0 references

cites work

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

1 reference

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

Rare Diseases – Avoiding Misperceptions and Establishing Realities: The Need for Reliable Epidemiological Data

21 January 2018

1 reference

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

Clinical research for rare disease: opportunities, challenges, and solutions

21 January 2018

1 reference

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

Clinical trials for rare lung diseases: lessons from lymphangioleiomyomatosis.

21 January 2018

1 reference

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

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

21 January 2018

1 reference

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

Drug development for orphan diseases in the context of personalized medicine

21 January 2018

1 reference

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

Power to the people: participant ownership of clinical trial data

21 January 2018

1 reference

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

Orphan drug development is not taking off.

21 January 2018

1 reference

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

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

21 January 2018

1 reference

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

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

21 January 2018

1 reference

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

Advocacy groups as research organizations: the PXE International example

21 January 2018

1 reference

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

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

21 January 2018

1 reference

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

Researching the biology of PXE: partnering in the process.

21 January 2018

1 reference

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

Advocacy groups and their role in rare diseases research

21 January 2018

1 reference

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

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

21 January 2018

1 reference

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

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

21 January 2018

1 reference

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

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

21 January 2018

1 reference

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

Predictors for clinical trial participation in the rare lung disease lymphangioleiomyomatosis

21 January 2018

1 reference

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

Examining the potential for exploitation by local intermediaries.

21 January 2018

1 reference

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

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

21 January 2018

1 reference

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

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

21 January 2018

1 reference

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

7 January 2021

Accrual to cancer clinical trials in the era of molecular medicine

1 reference

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

7 January 2021

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

1 reference

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

7 January 2021

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

1 reference

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

7 January 2021

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

1 reference

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

7 January 2021

The common problem of rare disease in general practice

1 reference

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

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

1 reference