Who We Are
We are the Rare Diseases Clinical Research Network (RDCRN), an initiative of the Office of Rare Diseases Research (ORDR), National Center for Advancing Translational Sciences (NCATS). We are funded by ORDR, NCATS and collaborating institutes and centers.
Our mission is to advance medical research on rare diseases by providing support for clinical studies and facilitating collaboration, study enrollment and data sharing. Through the RDCRN rare diseases research groups (consortia), researchers and their teams work together with patient organizations (patient advocacy groups) to study more than 190 rare diseases at clinical centers across the nation and worldwide.
The RDCRN was established by the ORDR, which is now a part of the NCATS. The RDCRN began in 2003. In total, over 190 diseases are studied by the 21 rare disease research groups of the RDCRN.
October 8, 2014: NIH funds research consortia to study more than 200 rare diseases
On October 8, 2014, the NIH announced that physician scientists led 22 consortia consisting of multidisciplinary teams will collaborate with representatives of 98 patient advocacy groups to advance clinical research and investigate new treatments for patients with rare diseases. Funding and scientific oversight for the RDCRN are provided by NCATS and 10 NIH components: the Eunice Kennedy Shriver National Institute of Child Health and Human Development; the National Cancer Institute; the National Heart, Lung and Blood Institute; the National Institute of Allergy and Infectious Diseases; the National Institute of Arthritis and Musculoskeletal and Skin Diseases; the National Institute of Dental and Craniofacial Research; the National Institute of Diabetes and Digestive and Kidney Diseases; the National Institute of Mental Health; the National Institute of Neurological Disorders and Stroke and the Office of the Director. In addition, patient advocacy groups provide funds for many of the projects.
October 5, 2009: NIH Announces Expansion of Rare Diseases Clinical Research Network
May 5, 2006: NIH Launches Clinical Studies Nationwide to Investigate Rare Diseases
November 3, 2003: NIH Establishes Rare Diseases Clinical Research Network
Collaborating Institutes and Centers
Funding and/or programmatic support for the RDCRN is provided by:
- Office of Rare Diseases Research, National Center for Advancing Translational Sciences (ORDR, NCATS)
- National Heart, Lung, and Blood Institute (NHLBI)
- National Institute of Allergy and Infectious Diseases (NIAID)
- National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
- Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
- National Institute of Dental and Craniofacial Research (NIDCR)
- National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
- National Institute of Mental Health (NIMH)
- National Institute of Neurological Disorders and Stroke (NINDS)
Data Management and Coordinating Center (DMCC)
The DMCC is funded by ORDR, NCATS to provide a secure, customizable, scalable coordinated clinical data management system for the collection, storage, and analysis of diverse data types from clinical researchers working on many different types of rare diseases.
The DMCC houses all data for the RDCRN centrally via in-house scalable and customizable electronic data capture systems; the DMCC system has collected and stores over 22 million data points. Some of the data systems built by the DMCC for the RDCRN include: internal members' only site with calendar, document navigation, comprehensive member directory with over 2400 consortium members and 400 institutions, committee structure, multi-tiered security (protocol-based, user-based, consortium-based, folder-based security structures); specimen collection, shipment, and tracking system; pharmacy shipment, inventory, and dispensation system; randomization system; participant management system with electronic case report forms (eCRFs); (online) eligibility voting system; standardized and automated report sets (accrual, demographics, adverse events, compliance, study status); automated XML/CSV data sets with associated data dictionaries; Adverse Event Data Management System (AEDAMS) for real time reporting, submission, review, and distribution of adverse events as they occur; and a Network Contact Registry.
DMCC Resources and Capabilities
Jeffrey P. Krischer, Ph.D., Principal Investigator, RDCRN DMCC
Distinguished University Health Professor
Director, Health Informatics Institute
University of South Florida
Jennifer L. Harris, MSPH, CCRP, Associate Director