Networks

CAlifornia Biostatistics Epidemiology and Research Design (CABERD) Consortium provides a forum for BERD Programs in the California region to collaborate on joint initiatives. Established in 2021 during the COVID pandemic to provide a venue for collaboration and knowledge-sharing, the CABERD Consortium is a network of the following 8 participating institutions: Stanford University, UCLA, UCSF, UC

The Rare Diseases Clinical Research Network’s Data Management and Coordinating Center (DMCC) at Cincinnati Children’s Hospital Medical Center and the University of Cincinnati is funded by the Office of Rare Diseases Research at the National Center for Advancing Translational Sciences to facilitate network operations, research, participant engagement and data sharing. Specifically, the DMCC

Vasculitis refers to a group of rare diseases that involve inflammation of blood vessels, which disrupts blood flow and often causes damage to the body’s organs. The cause of most forms of vasculitis remains unknown, and treatments involve the use of strong medications that can have serious side effects. The Vasculitis Clinical Research Consortium (VCRC) is an international, multicenter clinical

Urea cycle disorders (UCDs) are rare but devastating genetic conditions. In 2003, the Urea Cycle Disorders Consortium (UCDC) became one of the first members of the RDCRN. Since then, UCDC has flourished into an international network of 16 academic centers in the United States, Canada and Europe that provide state-of-the-art care and conduct cutting-edge clinical research. The UCDC is currently

The Primary Immune Deficiency Treatment Consortium (PIDTC) was established in 2009 to study and define optimal treatments for rare genetic disorders of the immune system, collectively known as primary immunodeficiency diseases. The PIDTC includes 44 immunology and transplantation centers throughout the United States and Canada as well as six patient advocacy groups. In its first nine years, the

The porphyrias are a group of rare, inherited disorders, each caused by a deficiency with one of eight enzymes necessary to produce heme, an important component of hemoglobin and other proteins. The porphyrias are classified as either acute hepatic (liver) or cutaneous (skin); the former is characterized generally by acute attacks of severe abdominal pain accompanied by nausea, vomiting and other

The Phenylalanine Families and Researchers Exploring Evidence (PHEFREE) Consortium studies the health, neurologic, cognitive, neuropsychiatric, patient-reported and quality-of-life outcomes in individuals with chronic elevations of the amino acid phenylalanine in blood (hyperphenylalaninemia). In the United States, elevated blood phenylalanine is typically detected at birth through newborn

Mitochondrial diseases affect approximately 1 in every 5,000 people. These diseases can cause muscle weakness, difficulty thinking, seizures, hearing and vision loss, digestive problems, learning disabilities, and organ failure. The North American Mitochondrial Disease Consortium (NAMDC) is a network of clinicians and researchers at 17 different clinical sites working to better understand

Focal and Segmental Glomerulosclerosis, Minimal Change Disease, and Membranous Nephropathy, presenting as Nephrotic Syndrome (NS), are a group of rare renal diseases that may cause serious complications and end-stage kidney disease, generating significant individual, societal and economic burdens. The Nephrotic Syndrome Study Network (NEPTUNE) brings together physician scientists at 26 sites in

Myasthenia gravis (MG) is an autoimmune disease that blocks the signal from nerve to muscle, producing weakness. The nature of the disease can range from isolated severe vision problems, like drooping eyelids or double vision, to profound general weakness leading to breathing muscle failure. Although the cause of MG is not known, the disease appears to vary based on several factors, including the

Lysosomal disorders (LD) are a group of approximately 70 inherited conditions resulting from defects in lysosomal function, usually the deficiency of a single enzyme required for the metabolism of lipids, glycoproteins, or mucopolysaccharides. Collectively, LD are not especially rare, and estimates suggest that roughly 1 in 5,000 newborns will be affected with one identified LD. However, each

Charcot-Marie-Tooth disease (CMT) is one of the most common inherited neurological disorders, affecting approximately 1 in 2,500 people in the United States. CMT, also known as hereditary motor and sensory neuropathy or peroneal muscular atrophy, comprises a group of disorders that affect peripheral nerves. The Inherited Neuropathy Consortium (INC) is a network of researchers working to find the

Leukodystrophies are a complex, often progressive group of disorders affecting the white matter of the brain due to the loss or absence of myelin, the lipid membrane that insulates axons in the central nervous system. Despite advances in the diagnosis of these disorders, they remain widely under-recognized, with unmet gaps in clinical care and curative therapeutics. The Global Leukodystrophy

The Genetic Disorders of Mucociliary Clearance Consortium (GDMCC) focuses on several inherited and acquired disorders that cause thickened, infected secretions to accumulate in the upper and lower airways. Its work is conducted at eight clinical research sites across the United States and Canada. During the past 15 years, the consortium has made numerous advances that profoundly changed clinical

Congenital disorders of glycosylation (CDG) consist of more than 130 different inborn errors of metabolism at an estimated overall incidence of greater than 1 in 100,000. While these disorders were first genetically defined in the 1990s, there is no data available on their natural history, no comprehensive patient registry, no reliable screening tests for many types, and large gaps in clinical

Dystonia syndromes are disorders that cause certain regions of the body to have uncontrollable movements, including twisting, spasms, repetitive shaking, or jerking. The most common dystonia disorders affect the head and neck, eyelids, vocal cords, hands, forearms, and sometimes the entire body. The overall goal of the Dystonia Coalition is to accelerate progress in dystonia research. Specific

Eosinophilic esophagitis, eosinophilic gastritis, eosinophilic gastroenteritis, and eosinophilic colitis are disorders in which a type of immune cell (called eosinophils) builds up in the digestive tract, causing gastrointestinal tissue damage. These disorders are painful, lifelong, and make it hard or impossible for people to eat many or all foods. The Consortium of Eosinophilic Gastrointestinal

The Congenital and Perinatal Infections Consortium (CPIC) is focused on reducing the morbidity and mortality of rare viral infections such as congenital cytomegalovirus (CMV) disease, neonatal herpes simplex virus (HSV) infection, and neonatal viral sepsis caused by enteroviruses (EVs) and the related human parechoviruses (HPeVs). These infections have been grouped together because of their

Amyotrophic lateral sclerosis (ALS) is a fatal disease that involves progressive death of motor nerves in the brain, brainstem, and spinal cord. The disease is closely related to disorders such as primary lateral sclerosis, hereditary spastic paraplegia, progressive muscular atrophy, and frontotemporal dementia. These diseases have shared genetic causes and underlying biology as well as a shared

The Brain Vascular Malformation Consortium (BVMC) focuses on three rare brain conditions: familial cerebral cavernous malformation (CCM), Sturge-Weber syndrome (SWS), and hereditary hemorrhagic telangiectasia (HHT). These disorders are poorly understood, costly to manage, and can cause serious complications such as hemorrhages, seizures, and problems with spinal cord, nerve or brain function. Over

Brittle bone disorders (BBDs), also known as osteogenesis imperfecta, include 13 inherited conditions involving bones that break easily. Brittle bone disorders can cause deformity and chronic pain and lead to premature death. The Brittle Bone Disorders Consortium (BBDC) includes 14 medical research sites working to better understand and treat these disorders. The consortium aims to explore the

Autism spectrum disorder (ASD) affects 1 in 59 children in the United States and is a major public health concern and challenge. The Developmental Synaptopathies Consortium (DSC) aims to explore the underlying causes of autism by focusing on three rare genetic disorders related to ASD, including Tuberous Sclerosis Complex (TSC), PTEN Hamartoma Tumor Syndrome (PHTS) and Phelan-McDermid Syndrome

The Strategies to Innovate EmeRgENcy Care Clinical Trials Network (SIREN) is a clinical trials network funded by the National Institute for Neurological Disorders and Stroke (NINDS), the National Heart Lung and Blood Institute (NHLBI) and the National Center for Advancing Translational Science (NCATS). The goal of the SIREN Network is to improve the outcomes of patients with neurologic, cardiac

With the focus on addressing some of the most complex health problems facing the southern region of the country, eight CTSA principal investigators representing seven states have united to form the Southeastern CTSA Consortium (SECC). Formation of the SECC is an important step toward improving the speed, efficiency, and efficacy of prevention and treatment efforts to address important health

The New York and Connecticut Consortium encourages joint ventures among the New York and Connecticut area CTSA institutions (NYCON) to develop collaboration between CTSA programs in the areas of medical scientist training; the creation of regional databases of facilities; regional training opportunities for investigators and research coordinators; the exploration of barriers to improved social

A leading cause of illness and death worldwide is Chronic Obstructive Pulmonary Disease (COPD), a group of lung diseases that make it difficult to breath. The COPD Outcomes-based Network for Clinical Effectiveness & Research Translation (CONCERT) is a consortium of six Clinical Centers and a Data Coordinating Center whose mission is to pool their expertise to ease the suffering caused by COPD. The

The Wisconsin Network for Health Research is a partnership of the UW School of Medicine and Public Health, Marshfield Clinic Health System, Aurora Health Care, and Gundersen Health System. WiNHR was established to promote statewide research and to assist in moving research results from bench to bedside, by allowing investigators to perform clinical, translational, comparative effectiveness and

The University of Rochester's Clinical and Translational Science Institution (CTSI) anchors the UNYTE Translational Research Network, made up of the region's premier biomedical research institutions. UNYTE's mission is to assist faculty and trainees from UNYTE institutions to increase the quality and quantity of translational research in the Upstate New York region. This is accomplished by

The Ohio Consortium was established to collaborate and take advantage of the strengths of the vast medical capabilities throughout the state of Ohio. With key infrastructure in place, including a statewide Institutional Review Board component and joint ventures uniting community partners, Practice Based Research Networks and other elements of the 3 existing CTSAs, the Ohio Consortium is positioned

The OneFlorida Clinical Research Consortium represents a strategic integration and expansion of CTSA hub partnerships throughout Florida to create a statewide infrastructure for patient-centered research in diverse health care settings. Consortium partners include the University of Florida, Florida State University, University of Miami and affiliated health care systems, health plans, providers

With an emphasis on educational issues and a goal of sharing resources, best practices and facilitating collaboration, members of the Midwest Consortium (MC) partner to strengthen clinical research education programs, mentoring, and career development opportunities for scholars. The Midwest Consortium for education and research collaboration began in 2006 with three Roadmap K12 institutions

UC BRAID, or University of California Biomedical Research Acceleration, Integration, and Development, is a network of five UC campuses - Davis, Irvine, Los Angeles, San Diego and San Francisco. Formed in 2010, the UC BRAID consortium aims to accelerate research and improve health through collaboration, sharing resources, and infrastructure development. We connect researchers and administrators to

The Greater Plains Collaborative (GPC) is a network of 12 leading medical centers in eight states committed to a shared vision of improving healthcare delivery through ongoing learning, adoption of evidence-based practices, and active research dissemination. GPC builds on strong research programs at individual sites, existing community engagement and informatics infrastructures and data warehouses

The Consortium of Rural States (CORES) was formed to facilitate collaborative and disciplined efforts that will produce new opportunities for advancing translational research. The Collaborative comprises Arkansas, Kansas, New Mexico and Utah, states that share common health care challenges, including significant rural populations. Each state is served by a single Clinical and Translational

The New England RSA Group (NE RSA) is committed to increasing community awareness of clinical research and building clinical research capacity and sustainability in New England and beyond. Composed of representatives from the New England region's CTSA hubs, the NE RSA explores common issues, interests and concerns related to research participant safety and the experience of participation. In

Founded on mutual interest rather than geographic proximity, the Sharing Partnership for Innovative Research in Translation (SPIRiT) Consortium links six CTSAs together to jointly develop innovative resources to support effective translational research. Consortium goals include promoting a sharing infrastructure for research data, tools, resources, and bio-specimens; establishing a network of

SHARe is a 12-member consortium launched by the Center for Clinical and Translational Science to build on the strengths of our Partner Network to develop a truly transformational research enterprise in multisite studies for the Deep South.

The Greater Los Angeles CTSA Consortium was established to leverage our local talents in collaborations that benefit both our local communities and our approaches to clinical research. The two main activities that are currently underway are (a) a Community Engagement working group that is developing and evaluating an intervention with promotoras to increase Latino representation in clinical trials

With its Lowering the Barriers program, the Texas CTSA Consortium is facilitating collaboration among the Texas CTSAs and other interested biomedical research institutions by an IRB reciprocity agreement and sharing of resources, expertise, and patient populations. The Texas CTSAs' BERD, bioinformatics, ethics, and PCIR components are meeting regularly to exchange best practices and tackle joint

The Strategic Pharma-Academic Research Consortium (SPARC), an organization to spark innovative collaborations in discovery and 'pre-competitive', disease target discovery stage between academic research institutions who are members of the NIH CTSA network and the biopharmaceutical industry. The consortium was established by 4 Midwestern CTSA Hubs as founding partners in 2014, along with two large

The Appalachian Translational Research Network (ATRN) is a 501©3 composed of academic institutions, community organizations, and individuals committed to translational research and training that addresses health disparities and inequities across the Appalachian region. Appalachia is a large, geographically-defined area of the eastern United States that has a history of significant health