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

Biology, Risk Stratification, and Therapy of Pediatric Acute Leukemias: An Update

(2011) Ching-Hon Pui et al.   JOURNAL OF CLINICAL ONCOLOGY

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

(2011) Sharon F Terry et al.   Personalized Medicine

Accrual to Cancer Clinical Trials in the Era of Molecular Medicine

(2011) R. L. Schilsky   Science Translational Medicine

"Creating Hope" and Other Incentives for Drug Development for Children

(2011) E. Connor et al.   Science Translational Medicine

Power to the People: Participant Ownership of Clinical Trial Data

(2011) S. F. Terry et al.   Science Translational Medicine

Examining the Potential for Exploitation by Local Intermediaries

(2010) David C. Landy et al.   AMERICAN JOURNAL OF BIOETHICS

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

(2010) Richard R. Sharp et al.   AMERICAN JOURNAL OF MEDICAL GENETICS PART A

Prognosis of Pulmonary Arterial Hypertension

(2010) Vallerie V. McLaughlin et al.   CIRCULATION

Clinical Trials for Rare Lung Diseases: Lessons from Lymphangioleiomyomatosis

(2010) Brent Kinder et al.   Lymphatic Research and Biology

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

(2010) Wouter Boon et al.   NEUROMUSCULAR DISORDERS

Orphan drug development is not taking off

(2009) Roberta Joppi et al.   BRITISH JOURNAL OF CLINICAL PHARMACOLOGY

Predictors for clinical trial participation in the rare lung disease lymphangioleiomyomatosis

(2009) Brent W. Kinder et al.   RESPIRATORY MEDICINE

Drug development for orphan diseases in the context of personalized medicine

(2009) George J. Brewer   Translational Research

Discovery of Rare Variants via Sequencing: Implications for the Design of Complex Trait Association Studies

(2009) Bingshan Li et al.   PLoS Genetics

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

(2008) David H Ledbetter   GENETICS IN MEDICINE

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

(2008) William Andrew Faucett et al.   GENETICS IN MEDICINE

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

(2008) Robert C. Griggs et al.   MOLECULAR GENETICS AND METABOLISM