Study on liver involvement in alpha1-antitrypsin deficiency
Author
Alpha1 Germany eV.
The Europe-wide study group on liver involvement in alpha-1 antitrypsin deficiency (AAT deficiency), with which we at Alpha1 Deutschland e.V. collaborate closely, offers various free specialized liver examinations. You can always find the latest information here.
Liver involvement is the second most common cause of reduced quality of life and life expectancy in AAT deficiency. However, liver involvement is often difficult to detect using standard diagnostic methods. Furthermore, there are no established standards for how and at what intervals liver function tests should be performed in patients with suspected or confirmed liver involvement. Both diagnosis and preventative care are crucial, as they are the only way to slow the progression of liver disease. Therefore, our research group has made it its mission to establish standards for liver diagnostics and preventative care to improve the treatment of affected patients. Further information can be found on our website (https://www.alpha1-deutschland.org/alpha-1-und-die-leber) or www.alpha1-leber.de
The study group uses, among other things, a special ultrasound device (e.g. FibroScan) to determine®The study includes measuring liver stiffness. Blood tests are also conducted to determine if there is any existing liver disease. The examination is completed with a questionnaire. All study participants receive a comprehensive and free analysis of their individual risk of liver damage. All tests are performed at no extra cost. The study team is also available by phone and email to answer any questions about the liver.
To enable comprehensive testing for all affected individuals, Aachen University Hospital, as the European reference center for AAT deficiency, offers examination appointments both in Aachen and at cooperating liver centers in Germany and abroad (e.g., Charité Berlin, Homburg University Hospital). Furthermore, the Aachen study team, along with its testing equipment, will travel to patients' locations if several patients wish to be examined at the same appointment. If you would like to arrange an appointment at another location, please contact the study team.
Your benefits of participating in the study at a glance:
- Comprehensive analysis of liver involvement AAT deficiency is treated by specialized liver experts.
- Free examination using modern and non-reimbursable technologies (e.g. FibroScan®), which are otherwise only available in specialized centers
- By request long-term care For all questions concerning your liver – by phone, email or in person at one of the cooperating Alpha1 liver centers
- Support for a multicenter study, which investigates liver involvement in Alpha1 patients in the long term and should lead to better treatments in the future.
Contact person for questions and registrations:
PD Dr. P. Strnad and Dr. K. Hamesh
European Reference Centre for Liver Involvement in Alpha1 Antitrypsin Deficiency
Alpha1 Study Center of the Department of Medicine III, University Hospital RWTH Aachen
E-mail: alpha1-leber@ukaachen.de
Hotline: 0241-8036606
As of August 9, 2019
