News & Events CTI Collaborated With Tuberous Sclerosis Alliance To Analyze Natural History Database

CTI Collaborated With Tuberous Sclerosis Alliance To Analyze Natural History Database

September 10, 2015

CTI Clinical Trial and Consulting Services Collaborated With Tuberous Sclerosis Alliance To Analyze Natural History Database

FOR IMMEDIATE RELEASE [Cincinnati, OH ~ September 10, 2015] CTI Clinical Trial and Consulting Services (CTI), a multi-national, privately held, full-service contract research organization announces it recently collaborated with the Tuberous Sclerosis Alliance to analyze a Natural History Database of currently more than 1,700 people with tuberous sclerosis complex (TSC).

In 2006, the Tuberous Sclerosis Alliance, in partnership with a network of TSC Clinics, launched the TSC Natural History Database, the first-of-its-kind project to collect information about TSC, which affects various organs in the human body including the brain, heart, kidneys, lungs, liver, skin and eyes. TSC is also associated with developmental disorders such as autism. Written permission is obtained from an individual with TSC (or from the parent of a child or dependent adult with TSC) to enter clinical information from his or her medical record into the TSC Natural History Database, which is a web-based system. New clinical information is added to the database as it is documented in the individual’s medical record.  

The analysis, performed by CTI and the Tuberous Sclerosis Alliance, was designed to compare various manifestations between genotypes and to determine if correlations exist between TSC symptoms and the TSC gene mutation. Data will be presented comparing various characteristics between TSC1 and TSC2 genotypes at the International TSC Research Conference: From Treatment to Prevention in Windsor, United Kingdom, taking place September 10-12, 2015. William Irish, PhD, Vice President, Biostatistics and Health Outcomes Research at CTI and one of the abstract’s authors, will make the presentation.

“We’re finding that groups like the Tuberous Sclerosis Alliance are becoming increasingly more important in drug development and research in rare diseases, as there is often a lack of information on rare disorders in published literature or traditional databases,” according to Joseph McCafferty, Vice President, North American Sales. “CTI is at the forefront in advancing these kind of collaborations and research efforts. We are very pleased to assist the Tuberous Sclerosis Alliance advance their mission to find a cure for tuberous sclerosis complex while improving the lives of those affected.”

“We are extremely proud to partner with CTI on presenting this important analysis on data collected in the TSC Natural History Database since 2006. For individuals and families who have participated in this important study, we are hopeful this type of information will help lead to scientific breakthroughs, ultimately improving the quality of life for those struggling with the daily challenges of TSC,” shared Kari Luther Rosbeck, President and CEO of the Tuberous Sclerosis Alliance.  

About CTI Clinical Trial and Consulting Services

CTI Clinical Trial and Consulting Services is a global, privately held, full-service contract research organization (CRO), delivering a complete spectrum of clinical trial and consulting services throughout the lifecycle of development, from concept to commercialization. CTI’s focused therapeutic approach provides pharmaceutical, biotechnology, and medical device firms with clinical and disease area expertise in rare diseases, regenerative medicine/gene therapy, immunology, transplantation, nephrology, hematology/oncology, neurology, infectious diseases, hepatology, cardiopulmonary, and pediatric populations. CTI also offers a fully integrated multi-specialty clinical research site that conducts phase I-IV trials. CTI has a passion for helping life-changing therapies succeed in chronically and critically ill patient populations. With clinical trial experience across 6 continents, CTI partners with research sites, patients, and sponsors to fulfill unmet medical needs. CTI is headquartered in Cincinnati, OH, with operations across North America, Europe, Latin America, and Asia-Pacific. For more information visit

About Tuberous Sclerosis Alliance

The Tuberous Sclerosis Alliance is the only national voluntary health organization in the United States dedicated to finding a cure for tuberous sclerosis complex (TSC) while improving the lives of those affected. In 1974, four mothers formed the organization to provide fellowship, generate awareness, pursue knowledge and offer hope to those who shared the common bond of TSC. TSC is a rare genetic disorder that causes tumors to form in vital organs, including the brain, eyes, skin, liver, lungs, heart and kidneys.  It is also the leading genetic cause of both autism and epilepsy.  TSC affects about 50,000 in the United States and more than 1 million worldwide.  Currently, there is no cure.  Since 2010, there have been two FDA-approved treatments to shrink tumors in the brain and kidneys of those with TSC, and promising research continues for additional therapies to improve the quality of daily life for every individual with TSC. For more information, visit

Original Press Release

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