RLDC Venn

The RLDC is a unique collaboration among patient organizations, clinical investigators and the National Institutes of Health.

 

Our Mission is to conduct molecular pathway-driven clinical research to develop novel diagnostics and therapeutics for rare lung diseases, provide clinical research training, and to provide information about rare lung diseases to patients, physicians, researchers, and the public.

  • Goals
  • Geographic Distribution of RLDC Partners
  • Clinical Centers
  • Rare Lung Disease Clinical Network
  • Patient Leadership
  • Academic Leadership
  • NIH Leadership
  • Data Management
  • Diseases Under Current Investigation
  • Diseases of Interest
  • Establish a geographically distributed network of research centers and patient advocacy groups to facilitate clinical research, training, and education for a selected group of rare lung diseases
  • Conduct clinical research studies in people with rare lung diseases
    • Conduct observational studies of the natural history of people with rare lung diseases
    • Provide access to specialized tests for diagnosis of rare lung diseases
    • Conduct phase I / II clinical trials to evaluate novel therapies for people with rare lung diseases
  • Provide clinical research training for the study of rare lung diseases
  • Conduct a pilot and demonstration project program for rare lung diseases
  • Provide educational materials about rare lung diseases to clinicians, researchers, and individuals who are known to be affected or possibly affected by a rare lung disease, and the general public
RLDC 2015 Map

Confirmed Clinical Centers

Lymphangioleiomyomatosis (LAM) Studies
University of Cincinnati Medical Center, Cincinnati, OH, Frank X. McCormack, MD
Vanderbilt University Medical Center, Nashville, TN, Lisa Young, MD

Pulmonary Alveolar Proteinosis (PAP) Studies
Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, Bruce Trapnell
Vanderbilt University Medical Center, Nashville, TN, Lisa Young, MD

Hermansky-Pudlak Syndrome (HPS) Studies
Vanderbilt University Medical Center, Nashville, TN, Lisa Young, MD
Columbia University Medical Center, New York, NY, David Lederer
Brigham and Women’s Hospital, Boston, MA, Souheil El-Chemaly
Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, Bruce Trapnell

 

Potential Clinical Centers

Brigham and Women's Hospital, Boston, MA
Cincinnati Children’s Hospital Medical Center, Cincinnati, OH
Cleveland Clinic Foundation, Cleveland, OH
Emory University School of Medicine, Atlanta, GA
Loyola University Medical Center, Chicago, IL
Mayo Clinic, Jacksonville, FL
Mayo Clinic Rochester, MN
Mayo Clinic, Scottsdale, AZ
Medical University of South Carolina, Charleston, SC
Minor & James Medical, Seattle, WA
National Institutes of Health, Bethesa, MD
National Jewish Health, Denver, CO
New York Presbyterian/Columbia University Medical Center, New York, NY
Oregon Health and Science University, Portland, OR
Saint Luke's Hospital, Kansas City, MO
Stanford University Medical Center, Stanford, CA
University of Alabama at Birmingham, Birmingham, AL
University of California, Los Angeles, CA
University of California, San Diego, CA
University of California, San Francisco, CA
University of Cincinnati Medical Center, Cincinnati, OH
University of Kansas Hospital, Kansas City, KS
University of Miami, Miami, FL
University of Michigan, Ann Arbor, MI
University of Pennsylvania, Philadelphia, PA
University of Rochester Medical Center, Rochester, NY
University of Southern California, Keck School of Medicine, Los Angeles, CA
University of Texas Health Center, Houston, TX
University of Texas Southwestern Medical Center, Dallas, TX
Vanderbilt University Medical Center, Nashville, TN
Washington University School of Medicine, St. Louis, MO
Yale University, New Haven, CT

The Rare Lung Disease-Clinic Network (RLD-CN) is a collaboration of geographically distributed academic and clinical centers. It is comprised of a network of 29 US and 18 international clinics that specialize in the treatment of individauls with rare lung diseases, such as LAM, PAP, pulmonary Langerhans cell histioctyosis. We hope to incorporate these centers into the consortium as appropriate.


RLD Map
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The Lymphangioleiomyomatosis (LAM) Foundation:

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The Pulmonary Alveolar Proteinosis (PAP) Foundation:

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The Hermansky-Pudlak Syndrome (HPS) Network Inc.:

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Alpha-1 Foundation:

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Histiocytosis Association:

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Sjogren’s Syndrome Foundation:

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Lymphangiomatosis and Gorham’s Disease Alliance:

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Children’s Interstitial and Diffuse Lung Disease (chILD) Foundation:

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Bruce Trapnell, MD

Principal Investigator, RLDC
Director of Pulmonary Alveolar Proteinosis (PAP) Studies
Cincinnati Children’s Hospital Medical Center, Cincinnati, OH

 

Frank X. McCormack

Administrative Director, RLDC
Director of Lymphangioleiomyomatosis (LAM) Studies
University of Cincinnati Medical Center, Cincinnati, OH

 

Lisa R. Young, MD

Director of the Pilot and Demonstration Project Component
Director of Hermansky-Pudlak Syndrome Studies
Vanderbilt University Medical Center, Nashville, TN

 

Jeffrey Whitsett, MD

Director of the Training Component
Cincinnati Children’s Hospital Medical Center, Cincinnati, OH

 

 

Lora Reineck, MD

National Institutes of Health Project Scientist and Program Officer
National Heart Lung Blood Institute

 

John Bucheimer

Grants Administrator
National Heart Lung Blood Institute

 

Rashmi Gopal-Srivastava, PhD

Office of Rare Diseases Research Liason
National Center for Advancing Translational Sciences/ Office of Rare Diseases Research

Jeffrey Krischer, PhD

Director of the Data Management Coordinating Center (DMCC)
University of South Florida, Tampa, FL

 

Hye-Sung Lee, PhD

DMCC Statistician
University of South Florida, Tampa, FL

 

Sarah Hollingshead, BS, CCRC

DMCC Project Manager
University of South Florida, Tampa, FL

Lymphangioleiomyomatosis

Pulmonary Alveolar Proteinosis

Hermansky-Pudlak Sydrome

Birt Hogg-Dube Syndrome

Pulmonary Langerhans Cell Histiocytosis

Pulmonary Alveolar Microlithiasis (PAM)
Disorders of Surfactant Production
Birt Hogg-Dube Syndrome
Pulmonary Langerhans Cell Histiocytosis
Sjogren’s disease with lung involvement
Lymphocytic Interstitial Pneumonitis
Follicular bronchiolitis
Lymphangiomatosis
Castleman’s Disease
Diffuse Idiopathic Neuroendocrine Cell Hyperplasia
Benign metastasizing leiomyoma
Erdheim-Chester Disease
IgG4-related Lung Disease
Idiopathic cystic lung disease
Plastic bronchitis
Hypersensitivity pneumonitis
Amyloidosis/Light chain deposition disease
Fabry’s disease with lung involvement
Gaucher’s disease with lung involvement
Lupus disease with lung involvement
Niemann-Pick disease with lung involvement
Alpha-1 Antitrypsin deficiency