How did people with rare diseases fare during the Corona pandemic? What additional challenges did and do those affected have to face?
The "RESILIENT-SE-PAN" project aims to uncover gaps in care and identify indications for improving care and the psychosocial situation of those affected. The project, which was announced and funded by the Eva Luise and Horst Köhler Foundation, is being carried out by the University Medical Center Hamburg-Eppendorf together with the Alliance of Chronic Rare Diseases.
A written online survey is currently underway, which takes around 30 minutes to complete.
People who are either affected themselves or are the legal guardians of a child or adult with a rare disease are cordially invited to participate. The information provided will help to visualize the impact of the pandemic on people with a rare disease and to derive recommendations for action.
As a matter of course all information provided is confidential and will be evaluated by qualified scientists from the Institute of Medical Psychology at the UKE Hamburg in such a way that it is not possible to draw conclusions about individuals. People who find it difficult to complete questionnaires in online format will be gladly supported by the study team.
In addition to the online survey, in-depth interviews will be conducted with some affected people and relatives.
The online survey will run until October 31, 2022.
to the online survey: https://redcap-survey.fit.uke.de/surveys/?s=NHRAEWED49Y4WYER
Contact persons for questions about the study
David Zybarth und Maja Brandt
Phone: 0049 40-7410 -54324 oder -52874
Dr. Laura Inhestern
Phone: 0049 40-7410 57684