Rare Lung Diseases Consortium
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The Rare Lung Diseases Consortium (RLDC) is a network of cooperating clinical centers and patient support organizations that are working with the National Institutes of Health (NIH) in a collaborative network whose novel structure is designed to accelerate clinical research and improve the delivery of medical care to individuals affected by rare lung diseases. 

According to the NIH Office of Rare Diseases, approximately 25 million Americans are affected by an estimated 6000 rare diseases, defined as a medical condition that affects fewer than 200,000 individuals in the United States.  This list includes a number of lung diseases. In September 2003, Cincinnati Children's Hospital Medical Center was awarded a $5.5 million grant from the NIH to establish and coordinate the Rare Lung Diseases Consortium (RLDC). Those rare lung diseases that are under current clinical investigation within the RLDC include: alpha-1 antitrypsin deficiency (AATD), lymphangioleimyomatosis (LAM), pulmonary alveolar proteinosis (PAP) and Rare Interstitial Lung Diseases (chILD, IPF, CTILD)

Mission 

The Rare Lung Diseases Consortium facilitates clinical research in rare lung diseases by conducting clinical trials in individuals affected by rare lung diseases, training clinical investigators in rare lung diseases research and providing access to information on rare lung diseases to basic and clinical researchers, academic and practicing physicians, patients, and the lay public.

Goals 

The Rare Lung Diseases Consortium serves the public in important ways by:

  • Developing and providing improved access to specialized diagnostic services
  • Conducting longitudinal studies of affected individuals through its network of collaborating clinical centers
  • Collecting clinical data from geographically distributed patients into a large, centralized database
  • Conducting phase I / II clinical trials to test novel therapeutic agents for treating individuals with rare lung diseases
  • Providing specialized training for clinical investigators in the care of individuals with rare lung diseases
  • Providing educational material and specialized information related to rare lung diseases to researchers, clinicians, individuals known to be affected or possibly affected by a rare lung disease, and the general public

A Clinical Research Collaboration

The Rare Lung Diseases Consortium includes clinical research centers in Ohio, Colorado, Florida, Maryland, Massachusetts, Oregon, South Carolina, Texas, Japan and Australia.

Collaboration among the centers has been facilitated in recent years by interactions between participating investigators and patient advocacy groups including the Miami-based Alpha-1 Foundation, Cincinnati-based LAM Foundation and Chicago-based Pulmonary Fibrosis Foundation. These organizations, and the newly formed PAP Foundation and Children's Interstitial Lung Disease Foundation (chILD Foundation), play a critical role in patient education, assistance in study subject recruitment for RLDC clinical trials and the support and development of foundations for other rare lung diseases as organized patient support networks.
Clinical Centers Map

Also see: Participating Clinical Centers

The RLDC Directors

Bruce Trapnell, MD, Professor within the Division of Pulmonary Biology at Cincinnati Children's and Scientific Director for the Alpha-1 Foundation will partner with Frank McCormack, MD, Chief of the Division of Pulmonary and Critical Care Medicine at the University of Cincinnati Medical Center and Scientific Director for the Cincinnati-based LAM Foundation. Through this partnership, a comprehensive center has been established to carry out longitudinal clinical studies, provide clinical training for young clinical investigators and to conduct clinical research designed to test novel therapies or develop outcome measures for rare lung diseases. Ongoing clinical, basic and translational studies have already yielded critical insights into molecular mechanisms underlying lung function and defense in health and disease.

Drs. Trapnell and McCormack
Bruce Trapnell (left) and Frank McCormack (right)