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

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).

Please take five to ten minutes to answer the questions.

The University Clinic Aachen plans to conduct the survey at least three different times (now, approx. 6 months and approx. 12 months after the start of the pandemic or after the first survey). You can view details of the data protection concept online right before the survey begins.

After starting the survey you will receive a random number, please write it down and keep it safe! You will need the number when completing the second and third surveys (in 6 and 12 months respectively).

In the sense of anonymous data collection, the number is stored without personal data and cannot be associated with you later! Parts two and three cannot be completed without the number. A new assignment or re-assignment of the number is not possible!

The survey was carried out by the Aachen University Hospital in cooperation with our association and the lichterzellen foundation.

The following link takes you to the start page of the survey: https://soscisurvey.ukaachen.de/sosci/covTelomerePatienten/

Thank you very much for your participation in the study!