The partnership of patient advocacy groups and clinical investigators in the rare diseases clinical research network

被引：0

作者：

Peter A. Merkel

Michele Manion

Rashmi Gopal-Srivastava

Stephen Groft

H. A. Jinnah

David Robertson

Jeffrey P. Krischer

机构：

[1] University of Pennsylvania,Division of Rheumatology and Department of Biostatistics and Epidemiology

[2] PCD Foundation,Departments of Neurology, Human Genetics and Pediatrics

[3] Office of Rare Diseases Research (ORDR),Departments of Medicine, Pharmacology, and Neurology, Clinical Research Center

[4] National Center for Advancing Translational Sciences (NCATS),Health Informatics Institute and Department of Pediatrics

[5] National Institutes of Health,undefined

[6] National Center for Advancing Translational Sciences (NCATS),undefined

[7] National Institutes of Health,undefined

[8] Emory University School of Medicine,undefined

[9] Vanderbilt University,undefined

[10] University of South Florida,undefined

来源：

Orphanet Journal of Rare Diseases | / 11卷

关键词：

Rare diseases; Patient engagement; Network;

D O I：

暂无

中图分类号：

学科分类号：

摘要：

引用

共 34 条

[1]

Groft SC(2013)A model for collaborative clinical research in rare diseases: experience from the Rare Disease Clinical Research Network program J Clin Invest 3 1015-21

[2]

Gopal-Srivastava R(2014)The Rare Diseases Clinical Research Network's organization and approach to observational research and health outcomes research J Gen Intern Med 29 S739-44

[3]

Krischer JP(2013)Brain Vascular Malformation Consortium: overview, progress, and future directions J Rare Disord 1 1-15

[4]

Gopal-Srivastava R(2011)Rationale and design of the chronic GVHD cohort study: improving outcomes assessment in chronic GVHD Biol Blood Marrow Transplant 17 1114-20

[5]

Groft SC(2013)Design of the Nephrotic Syndrome Study Network (NEPTUNE) to evaluate primary glomerular nephropathy by a multidisciplinary approach Kidney Int 83 749-56

[6]

Eckstein DJ(2009)An automated communications system in a Contact Registry for persons with rare diseases: scalable tools for identifying and recruiting clinical research participants Contemp Clin Trials 30 55-62

[7]

Akers A(2012)The Rare Diseases Clinical Research Network Contact Registry update: features and functionality Contemp Clin Trials 33 647-56

[8]

Ball KL(2012)How disease advocacy organizations participate in clinical research: a survey of genetic organizations Genet Med 14 223-8

[9]

Clancy M(2013)Forging stronger partnerships between academic health centers and patient-driven organizations Acad Med 88 1220-4

[10]

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