Studies

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

Results of the PEGASUS study on APL-2

A recently published study from Leeds, England examines the effectiveness of the new drug pegcetacoplan on paroxysmal nocturnal hemoglobinuria (PNH). Pegcetacoplan has not yet been approved for PNH therapy in Europe, but approval is currently being examined by the European Medicines Agency (EMA). For this reason, we would like to briefly introduce the drug and the study to you and first take a brief look at the blood formation disorder underlying PNH in order to understand how Pegcetacoplan works:

Normally there are certain proteins on the surface of the red blood cells (erythrocytes), which transport oxygen through our body. Among other things, these regulate the immune system and prevent the erythrocytes from being broken down prematurely as they circulate through the body. At the PNHWEITER

Patients with stem cell transplants: study on sport and exercise

Heidelberg University is currently carrying out a research project in collaboration with the National Center for Tumor Diseases (NCT): Patients who have received a stem cell transplant are asked about their attitudes towards physical activity. Specifically, the aim is to determine how patients feel about physical activity during and after a stem cell transplant, how they perceive it and how well they feel advised in this regard. Above all, questions are asked about the situation before the start of the pandemic, when sport and exercise were perhaps easier and more diverse. As an association, we would like to support this study, because its aim is to adapt the offers of help and information materials on the subject of "Sport and exercise in stem cell therapy" more specifically to the wishes and needs of the patients. WEITER

Pandemic Impact Survey on AA / PNH Patients

In July / August 2020, under the leadership of Priv.-Doz. Dr. Fabian Beier started the first round of a survey to record the effects of the SARS-CoV-2 pandemic on AA and PNH patients in Germany. The focus was on the availability of information on COVID-19 and delays in treatments. We were very pleased that the lichterzellen foundation and our association were included in the design of the survey.
The evaluation of the first round of questions showed that around 20% of the respondents had little or no access toWEITER

EMAA trial

EMAA trail for patients with moderate Aplastic Anaemia Adult patients with acquired moderate Aplastic Anaemia (mAA) who have not received a specific treatment for their mAA may be included in the EMAA trial of Ulm University (Eltrombopag in Moderate Aplastic Anaemia). They receive either ciclosporin and eltrombopag or ciclosporin and a placebo. The aim of the trial is to evaluate the efficacy and safety of the combination therapy of ciclosporin and eltrombopag. Patients with or without prior transfusions can be included.
WEITER

Survey by the Aachen University Hospital on the consequences of the COVID-19 pandemic for AA / PNH patients

Since the current COVID-19 pandemic creates a lot of unrest and new questions arise every day, the University Clinic Aachen, under the direction of Priv.-Doz. Dr. Fabian Beier developed a survey (so-called Soci-Survey). In doing so, the clinic would also like to meet the wishes of many patients to collect and evaluate data on the current COVID-19 situation in order to learn about the effects of the pandemic on personal life and medical care as well as knowledge of its course and frequency of COVID-19 especially in patients with PNH and / or AA or dyskeratosis congenita (DKC).WEITER

Survey on working conditions

The University of Cologne - Chair for Work and Vocational Rehabilitation - would like to find out in an anonymous online survey what the working conditions of people with health impairments are like. The aim is to use the information obtained "at first hand" to help improve their working conditions in the long term. Anyone over the age of 18 who is currentlyWEITER

DGHO annual meeting in Berlin

This year's annual meeting of the German, Austrian and Swiss Societies for Hematology and Medical Oncology - in short "DGHO Meeting" - took place from October 11-14, 2019 in Berlin and again offered numerous lectures, including on aplastic anaemia and PNH. In the case of aplastic anaemia, it wasWEITER

Alexion plans to acquire Achillion

Alexion Pharmaceuticals, the maker of eculizumab (Soliris®) and ravulizumab (Ultomiris®), has reached an agreement with Achillion Pharmaceuticals to provide the smaller biopharmaceutical company for approximately $ 930 million (equivalent to approximately € 840 million) take over. If Achillion shareholders and regulators agreeWEITER