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Successful completion of the ID-ALS study Part 1: genetic testing of 1.000 people with ALS in Germany
Successful completion of the ID-ALS study Part 1: genetic testing of 1.000 people with ALS in Germany

The first part of the ID-ALS study to identify genetic alterations in people with amyotrophic lateral sclerosis (ALS) was successfully completed by Ambulanzpartner on 30.10.2022. In the study 1.000 people with ALS tested for genetic changes within 12 months. The study participants were predominantly suffering from sporadic ALS, which means they had no family history of ALS.

Fifteen ALS outpatient clinics in Germany participated in the study. In 14% of the 1.000 participants were found to have a mutation (disease-causing genetic variant) in the investigated genes SOD1, C9orf72, FUS or TARDBP. This is significantly more mutation carriers than in comparable studies by other research groups, in which about 10% of all ALS sufferers showed genetic changes.

Among the mutation carriers in the ID-ALS study were 23 patients with mutations in the gene of superoxide dismutase 1 (SOD1). Of these 23 SOD1-ALS patients were 13 enrolled in a hardship programme and started treatment with the drug Tofersen. Tofersen therapy is suitable for patients who have a mutation in the SOD1 gene. Additional SOD1-ALS patients from the ID-ALS study are in preparation for enrolment in the Tofersen hardship case programme. The transfer to the hardship programme is a direct benefit for the participants of the ID-ALS study.

The results of the ID-ALS study are of great relevance for those affected themselves, but also for medical research. Currently, the scientific evaluation of the data from 1.000 patients is taking place and the Publication in a professional journal is planned. The scientific analysis is the most comprehensive evaluation of the genetics of ALS in Germany to date.

We would like to thank Thank all the people who participated in our genetic study this year and provided their data for research. The research project could only succeed because of their support and data donation. The study is a good example of successful collaboration between specialised ALS centres, Ambulanzpartner and an industry partnership with the Biogen company.

After the successful completion of the first part of the study, we are now starting to continue it. With **the second part, more than 1.000 patients with ALS are also to be examined for genetic changes within the framework of ID-ALS in 2023.**Due to the availability of a therapy against SOD1 mutations, knowledge about genetic mutations is becoming increasingly therapeutically relevant. With the second part of ID-ALS, we want to continue to achieve a positive benefit for participants and medical research.

Dipl.-Ing. Peggy Schumann
Telefon: 030-81031410