Open GenomLC [Genetic study on long COVID in Germany]

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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.

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.

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.

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?").