International Collaborations on Tuberous Sclerosis
It all began when David Franz, MD, professor of Neurology at Cincinnati Children's Hospital Medical Center, was invited to give a lecture at Novartis, a multinational pharmaceutical company. There he hooked up with colleague Ralph Wienecke, MD, and the two began discussing the need for developing international collaborations to further advance the treatment of children affected by tuberous sclerosis (TS) -- a genetic condition that causes tumors to form in multiple organs of the body, including the heart, brain, liver and lungs. Many physicians around the world still know very little about TS.
Forming International Partnerships
Dr. Franz's next call was to Dietmar Reiser, MD, a colleague he knew in Germany. They began talking, emailing, information sharing and inviting each other to meetings. There are approximately 10,000 cases of tuberous sclerosis in Germany today.
Eventually, Dr. Franz and Dr. Reiser formed a partnership, which helped to form specialized tuberous sclerosis clinics in Germany. One such clinic is the Dattelner Paediatric Clinic, which became certified as a tuberous sclerosis center in September 2006. Through this partnership, Dr. Franz and Dr. Reiser also started a research study in Germany, where currently there are no approved medicines to treat tuberous sclerosis.
Dr. Franz has since helped found tuberous sclerosis clinics in Italy and Poland. Cincinnati Children's sees patients from these countries, as well as provides second opinions, reviews clinical cases and assists in setting up clinical trials. In addition, Dr. Franz serves as an advisor for the annual conference of the Self-Help Society in Germany, an event that allows for additional information sharing among health providers from Germany and other neighboring countries.
