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EXTINCT - Study on post-COVID syndrome
The recruitment phase is complete. The collected data is in the evaluation phase.
The complex clinical symptoms of post-COVID syndrome, in particular chronic fatigue, pose a major challenge for patients and the healthcare system. There are indications that a dysregulated immune response may be involved in the development of the symptoms. In uncontrolled case studies, some post-COVID patients have reported an improvement in fatigue symptoms after removal of autoantibodies. However, there is a lack of prospective, randomized, placebo-controlled studies to date.
The Clinical Department of Nephrology and Hypertension at Hannover Medical School, in cooperation with other departments at MHH, has therefore initiated an interventional placebo-controlled study, the EXTINCT post-COVID study, which scientifically investigates the therapeutic efficacy of an extracorporeal apheresis procedure (immunoadsorption) in the treatment of a well-characterized post-COVID cohort and thus provides fundamental insights into the pathophysiology and pathogenesis of post-COVID syndrome.
ZSE-DUO
This project has been completed and initial results have already been published.
Dual pilot structure for clarifying unclear diagnoses in Centres for Rare Diseases - four eyes see more than two. This also applies to the diagnosis of rare diseases. We therefore want to find out whether a dual pilot structure - with one specialist each for physical and psychiatric-psychosomatic diseases - has a positive effect on the diagnosis and care of people with suspected rare diseases. We are establishing and testing this new form of care as part of the ZSE-DUO project.
What is ZSE-DUO?
Patients who present to a Centre for Rare Diseases on suspicion of a rare disease often suffer from complex symptoms. The symptoms are often accompanied or even caused by psychiatric-psychosomatic illnesses. This makes diagnosis even more difficult.
With the ZSE-DUO project, we want to find out whether the situation can be improved through a new form of care. As part of the project, a dual pilot structure is being introduced in eleven Centres for Rare Diseases across Germany. This means that in addition to a specialist for physical complaints, a specialist for psychiatric-psychosomatic illnesses will accompany the clarification of the complaints from the outset and on an ongoing basis.
What are the aims of ZSE-DUO?
The introduction of the new pilot system is intended to ensure that the correct diagnoses are made more frequently and more quickly in Centers for Rare Diseases, so that more people can receive appropriate treatment earlier. This benefits patients and saves costs.
Further information on ZSE DUO:
- Project flyer on ZSE-DUO (PDF)
- Project descriptions on the website of "Achse e.V."
- Project descriptions on the website of the Joint Federal Committee
European Reference Networks (ERN) for Rare Diseases with participation of the ZSE of the MHH
Healthcare systems in the European Union should ensure high-quality and cost-effective medical care. This is particularly difficult in the case of rare and complex diseases that affect the lives of 30 million EU citizens.
European Reference Networks (ERNs) are virtual networks of healthcare providers across Europe. They work together to cure complex or rare diseases and health conditions that require highly specialized treatments and a high concentration of expertise and resources.
- Further information can be found on the website of the European Commission
List of ZSE participations in European reference networks (as of 2023)
- ERKNet
- ERN TRANSPLANT-CHILD
- MetabERN
- ERNICA
- ERN-RND
- GENTURIS
- ERN-LUNG
Other European reference networks with MHH participation
- Paed-Can
- RARE-LIVER
- COVID-19
Further information on all ERN participations of the MHH can be found in the list.
German (reference) networks for rare diseases
Based on the network structure of the European Reference Networks (ERN), there is a national initiative in which specialist centers of different Centres for Rare Diseases cooperate across Germany on a disease-specific basis: German (Reference) Networks for Rare Diseases (Care Networks).
List of network participations of MHH-ZSE specialist centers (as of 2020)
- dERNICA Esophagus-Abdominal Wall Network
- DRN Skin
- EpiCARE
- GENTURIS
- Hepatorenal tyrosinemia
- Care Network Biliary Atresia
Please refer to the linked PDF file for the specialist centres that collect data on patients with one or more rare diseases treated at the centre, taking into account applicable data protection regulations, which they report either via their reference centre or directly to a recognized national or international disease/disease group-specific registry, if such a registry exists.