People's development, and how they feel and behave, is often influenced by the environment and by their genes. This also applies to autism. However, the exact role of environment and genes on how autism is expressed is still unknown.
The trigger
Large-scale research has recently found several places in DNA (called genetic variants) associated with autism. We now know that such genetic variants individually have only a very small effect on the expression of autism and can also occur in people without autism. What we do not know is whether these small genetic effects add up to affect the experiences and behaviours of people with autism. Also, little is known yet about what the relationship is between a person's environment, their genetic variants and the expression of autism.
The study
In the EGAL project, by combining environmental and genetic data, we hope to gain more insight into whether and how these effects affect behavior, health and well-being in people with autism.
Genetic information, the DNA, we will collect through saliva. We will collect information about the environment in which people live through the 4 digits of your zip code. We then look at so-called "objective" environmental factors such as traffic noise, green spaces in the area and the proximity of care centers.
With this research we try, among other things, to map if and how environment and genes interact and influence individual differences in behavior, health and well-being. These include time of diagnosis, well-being, working conditions, treatment outcomes and additional problems, such as depression or sleep problems.
Because little is yet known about the influence of objective environmental and genetic factors, this research is primarily scientific in nature. In doing so, we seek to gain more insight into the underlying basis of how life with autism is experienced. For example, if it turns out that an elevated genetic score is strongly correlated with depressive feelings, this could be a reason to use genetic knowledge in diagnosis or prognosis about the course of autism.
Similarly, environmental factors that are helpful or risky could be identified. With these insights, we hope to ultimately improve the quality of life of people with autism through more appropriate care and support.
Participation
The EGAL project will start in March 2022. As of this time, you as a NAR participant can be invited to the DNA collection. Not all NAR participants will receive an invitation. Participation in this study is of course voluntary. To ensure your privacy, genetic data will be stored confidentially and encrypted at all times. More information about the NAR's general privacy guidelines can be found at Nederlands Autisme Register - Privacy and Security. The information letter you will receive when you decide to participate will explain more about what exactly the study entails and how we will handle your data.
The results
Results of the research will be reported back through the NAR website under the heading "Publications." On this page you will find all of our scientific articles, Autism Magazine articles, and NAR annual reports. Analyzing genetic data takes some time. We expect the first results in 2025.
A panel has been appointed to advocate for and advise us on researching environmental and genetic factors that influence the course of autism. This panel consists of 5 individuals ages 20 to 60. Panel members are autistic themselves and/or have children with autism.
The EGAL project, which stands for "Environmental and Genetic influences across the Autism Lifespan," is part of the larger project ALONG: Autism Longitudinal. Among others, the OMA project, which stands for Online Measurement of Autism, is also part of this. More will be announced soon about other studies within the ALONG project.
