You´ve just learned that your child was born with an Esopagheal Atresia, meaning that the tube in the body that carries food from the mouth to the stomach is not correctly developed. Atresia is a medical term to describe a state of a missing and absent or closed orifice or passage in the body.
We are trying to provide you with an overview of our TIC-PEA project, aim and organisation in english. If you feel that the information provided on the TIC-PEA homepage is not sufficient to answer all your questions, please do not hesitate and feel free to contact us!
Congenital malformations of the esophagus and trachea are rare. Not every pediatric surgeon can be an expert for every condition. The initial treatment is crucial for patient outcome. TIC-PEA is a scientific study aiming to improve care and outcome for patients and their families. Patients as well as attending physicians of newborns and infants with these malformations are included as study participants.
TIC-PEA offers a comprehensive care concept for participating patients with Esophageal Atresia, their families and their primary physicians. After the caregivers’ written consent, attending physicians are contacted regularly via secure online-based video-conference and discuss the case with national and international experts in the field of esophageal malformations. Final decisions and patient care remain in the hands of the attending physicians.
Furthermore, patients’ families participating in TIC-PEA are contacted by the German patient organization KEKS e.V. for children and adults with esophageal disease for early support. You can get in touch with KEKS e.V. in case of immediate questions, sorrows and problems at any time.
Patient outcome is monitored and compared to a cohort of the KEKS e.V. patient registry and a cohort of children insured by the German Techniker Krankenkasse (TK).
Aim of the study is to prove that telemedical counseling by experts on the field of this rare malformation is technically feasible, economical and effective to improve patient outcome.
Not speaking German should not be a reason for you and your child to not participate in TIC-PEA.
In case a translation of information into other languages than English and German is needed for you and your family please also contact us! There are many different nationalities within our team and we will try to find a way for you to unterstand everything. Even though primarily intended for patients cared for within the German health care structures, international patients are at the moment still welcome to participate in TIC-PEA benefit from the set-up of the TIC-PEA project.
The TIC-PEA project is a scientific study and officially registered with the German Clinical Trials Register, (https://www.drks.de/drks_web/navigate.donavigationId=trial.HTML&TRIAL_ID=DRKS00020951). On the website of the German Clinical Trials register you can activate an english version by clicking on the British flag in the right upper corner and learn more about TIC-PEA.
The study is lead by Univ.-Prof. Dr. Oliver Muensterer and the TIC-PEA Team and TIC-PEA Tele-Lab are located at the Clinic and Polyclinic for Pediatric Surgery at the University Hospital Mainz.