Studies Tag

DGHO guideline on PNH updated

The German Society for Hematology and Medical Oncology (DGHO) has updated the guideline for PNH . The recommendations for diagnosis and therapy were brought up to date.

11th Essen patient seminar successful

On September 28, 2019, the Essen University Hospital held its 11th patient and family seminar on PNH and AA. Under the direction of Prof Dr Ulrich Dührsen and PD Dr Alexander Röth as usual a varied and exciting program was offered that left enough space for breaks and exchanges between the more than 200 participants. WEITER

Update of PNH guideline

 

Guidelines are summaries of the current scientific knowledge about a disease – in addition to a complete list of possible symptoms and the most targeted diagnostic methods, you can read about the best possible treatment options according to the current state of knowledge. They serve primarily as a non-binding guide for doctors, but also contain interesting information for patients. Every now and then, guidelines are updated so that the findings of new studies can be incorporated into everyday medical practice - this is exactly what happened this month for the PNH guideline of the German Society of Haematology and Medical Oncology (DGHO) . The last version was still from November 2019 and a revision was necessary in particular to bring recommendations on the use of new drug therapy options up to the status of 2022: Specifically, we are talking about pegcetacoplan, the new C3 complement inhibitor, which has been approved in the EU since December 2021 under the trade name Aspaveli® and, according to the manufacturer Swedish Orphan Biovitrum AB (Sobi), is expected to be available as a therapy option in Germany from April 2022. WEITER

Approval of pegcetacoplan for PNH patients

On 13 December 2021 a new drug for the treatment of adult patients with PNH was approved in the EU: The substance pegcetacoplan which inhibits specific processes in the immune system will probably be available in Germany in the beginning of 2022. Its trade name is Aspaveli®.

The drug is a so-called C3 complement inhibitor: The complement system is part of the body's own immune system which in PNH attacks the red blood cells (erythrocytes) and destroys them. Pegcetacoplan inhibits a certain part of the complement system and thereby the destruction of red blood cells outside the blood vessels (extravascular), leading to an improved life cycle of the erythrocytes and improved haemoglobin levels.

Pegecetacoplan is approved for patients who remain anaemic despite treatment with a C5 inhibitor (eculizumab or ravulizumab) for at least 3 months. C5 is also part of the complement system. The drug is administered twice a week as a subcutaneous infusion. Among the most common side effects are reactions at the injection site, infections of the upper respiratory tract, headache, abdominal pain, and diarrhoea.

"Summary of product characteristics" by the European Medicines Agency EMA.

The drug is not entirely new: On 5 April of this year, we already reported in detail on the mechanism of action and the current studies on it in a blog post on our website.

12th Essen PNH/AA Seminar – Summary

WEITER

Lectures of the Ulm Patient Day online

In connection with the Day of Rare Diseases , the Ulm University Hospital held another AA / PNH patient seminar on March 6th, 2021. Due to the pandemic, it took place in virtual form for the first time and also attracted numerous participants in this format.

The lectures of the varied program are available for download on the website of the Center for Rare Diseases of the Ulm University Hospital .

Invitation to the Essen patient and family seminar

We are delighted that the Essen University Hospital is inviting you to its 12th PNH and AA seminar for patients and relatives . Due to the ongoing pandemic, it will take place virtually this year: On Saturday, September 25th, 2021 from 10 a.m. to 12 p.m. you will be brought up to date on the diseases and will have the opportunity to ask questions.


Invitation and link to participate

Workshop on AA / PNH on June 14th, 2021

A virtual workshop on aplastic anemia and PNH will take place on Monday, June 14th, 2021 at 5 p.m. Prof. Dr. Jörg Westermann from Charité - Universitätsmedizin Berlin will inform you about the origin, diagnosis and treatment options for both diseases and is available to answer any questions. Afterwards, the participants have the opportunity to exchange experiences with one another.

The workshop is part of the DLH patient congress ( Deutsche Leukämie- & Lymphom-Hilfe eV ), which also offers numerous other workshops on, in some cases, cross-disease topics. Take a look at the program and register at https://www.dlh-kongress.de/der-kongress/online-anmeldung/ .

*** Attention! The workshop is not recorded so you cannot watch it later! ***

Exercise reduces risk of severe COVID-19 courses

It's no secret that exercise is good for our body: we have all heard or read somewhere that regular physical activity reduces the risk of developing metabolic or cardiovascular diseases, for example. For about a year, however, fitness studios and sports clubs have been closed and even an evening walk is made difficult in some places by a curfew. In short - the pandemic is not exactly making it easier for us to stay fit. Meanwhile, the large-scale British Journal of Sports Medicine study from the USA suggests that exercise is particularly important in these times: Almost 50,000 COVID-19 infected peopple were asked about their daily activitly level (looking back for the past two years before infection with SARS-CoV-2). The study was recently published. 14% of the respondents were physically inactive (≤ 10 minutes of exercise per week). 80% reported moderate activity (11-149 minutes of exercise per week) and 6% did steady 150 minutes of exercise per week. WEITER