key: cord-1041414-i7hmdh4g
authors: Beier, Fabian; Kricheldorf, Kim; Burmester, Pascale; Göbel, Ulrike; Isfort, Susanne; Panse, Jens; Brümmendorf, Tim H.
title: Internet‐based patient survey on the consequences of COVID‐19 lockdown on treatment and medical follow‐up of patients with aplastic anemia or paroxysmal nocturnal hemoglobinuria in Germany
date: 2021-02-17
journal: Eur J Haematol
DOI: 10.1111/ejh.13587
sha: 3dca71a05b9a046c3fa186526e48a39962da4805
doc_id: 1041414
cord_uid: i7hmdh4g

In 2020, the SARS-COV-2 virus began to spread all over Europe. On March 27th , the federal together with the local governments decided a bundle of measures to reduce the rate of infections and to control the resulting COVID-19 outbreak in Germany1 . This so called "lockdown" significantly affected outpatient and inpatient care in the field of hematology and oncology in Germany.

In 2020, the SARS-COV-2 virus began to spread all over Europe. On We therefore initiated a retrospective Internet-based survey to evaluate potential consequences of the COVID-19 lockdown on patients with AA and/or PNH in Germany focusing on the availability of reliable patient information and delay of treatment initiation. The link to the web-based survey was conducted between July 8 and August 15, 2020, through the webpages and the email newsletter of two German patient advocacy groups for AA and PNH, namely Table 1 . Finally, curative treatment was postponed in a significant number of patients with sAA. The impact of delayed treatment initiation due to COVID-19 remains speculative. However, based on previous data, we assume an impaired long-term outcome especially in sAA patients. 10 Follow-up studies are clearly warranted to substantiate the latter issue.

We thank all patients and families for the support and for participating in this survey. Kim Kricheldorf is supported by the Task force COVID-19 Forschungsnetzwerk.

Task force COVID-19 Forschungsnetzwerk.

The other authors have nothing to disclose.

FB, KK, and THB conceived and planned the study design, interpreted the data, and wrote the manuscript. PB and UG supported the study and interpreted the data. SI and JP analyzed the data and planned the study design. 

Gesetz zum Schutz der Bevölkerungbei einer epidemischen Lage von nationaler Tragweite

COVID-19 -bone marrow Failure and PNH: recommendations on behalf of the EBMT severe aplastic anemia working party

Terminal complement inhibition dampens the inflammation during COVID-19

Direct activation of the alternative complement pathway by SARS-CoV-2 spike proteins is blocked by factor D inhibition

COVID-19 prevalence and mortality in patients with cancer and the effect of primary tumour subtype and patient demographics: a prospective cohort study

Clinical characteristics and risk factors associated with COVID-19 severity in patients with haematological malignancies in Italy: a retrospective, multicentre, cohort study

COVID-19 in benign hematology: emerging challenges and special considerations for healthcare professionals

Challenges in the management of sickle cell disease during SARS-CoV-2 pandemic

COVID-19 and thalassaemia: a position statement of the Thalassaemia International Federation

Current outcome of HLA identical sibling versus unrelated donor transplants in severe aplastic anemia: an EBMT analysis