GenomLC

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FAQ

What is it?

Approximately 10% of all people infected with the SARS-CoV-2 virus (commonly known as "COVID-19") suffer from long-term health consequences. Headaches, respiratory problems, digestive issues, fatigue, and more: the symptoms can vary widely and affect different organs.

While some people experience only minor disruptions to their daily lives, others are completely thrown off course. All these diverse long-term consequences are collectively referred to as "Long COVID" (LC). Long COVID is still poorly understood, and many questions remain unanswered.

Why do some people get seriously ill while others hardly get sick at all?
Can the different forms of Long COVID be distinguished from one another and divided into subgroups that should be treated differently?
Can classifying patients into such subgroups lead to a more accurate diagnosis and better medical care?
We know from other common diseases that, among other factors, our genetic makeup influences whether we develop a disease, which symptoms appear, and how severe the illness is. This is also referred to as genetic predisposition. Little is currently known about the genetic predisposition for Long COVID. As researchers in human genetics, we aim to close this research gap and investigate the genetic causes of Long COVID.

To achieve this, we need information from those affected about their genetic makeup and the course of the disease – this is only possible with your support!

Who is allowed to participate?
Any adult (18 years and older) with a confirmed or suspected long-term COVID illness (confirmed by their doctor or themselves) can participate. Important: Documented evidence of previous exposure to the SARS-CoV-2 virus (coronavirus) is required, either through infection or vaccination. Individuals with ME/CFS can only be included in our study if their symptoms developed after a SARS-CoV-2 infection or vaccination.

They should be able to consent to the genetic testing themselves.

We will also be including children and young people in the study. However, we are not currently able to offer this. You can find more information about this on our website as the study progresses.

Do I have to travel to Bonn for a medical examination?
No, you don't need to travel.

The study questionnaire is available digitally, and no examinations will take place at our location in Bonn. You can conveniently complete the questionnaire from home using your mobile phone or computer. You can pause and resume it at any time.

For the blood sample, you will need to have your doctor draw blood. You then send the blood sample back to us. If you are accepted into the study, we will send you the necessary materials and prepaid shipping envelopes in advance.

What exactly is being examined in my genome?​

For the evaluation, we will consider the genetic data together with the symptoms you indicated in the questionnaire. First, we will examine your genome, based on diagnostic standards, for known hereditary diseases that could explain your symptoms (for example, immune system disorders). You will receive a research report from us with these results. This report is not a diagnostic report. It does not constitute a comprehensive genetic examination for all possible diseases. Participation in the genomLC study does not mean that genetic diseases can be definitively ruled out.

The in-depth research analysis then follows. For further investigations, we systematically analyze the entire genome (the complete set of a person's genetic information). This analysis is supplemented by targeted investigations to better interpret the results. Such methods are already widely used in international genetic studies. A research report of this analysis is not usually to be expected. In special cases, and if you consent in the informed consent form, feedback may be provided (see "What are reanalysis and incidental findings?").