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Current status of genetics in ALS and Tofersen: ID-ALS study and hardship program.
14.05.2024
Current status of genetics in ALS and Tofersen: ID-ALS study and hardship program.
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We would like to briefly update you on the current status (03/01/2023) of the ID-ALS02 study and the transition to the Tofersen Hardship Program

After the successful completion of the first part of the ID-ALS study, its continuation was started in October 2022. With the second part of the study (ID-ALS02), so far 1,476 patients with amyotrophic lateral sclerosis (ALS) screened for genetic alterations in ID-ALS.

Patients who are enrolled in one of the participating 13 ALS study centers are in care can participate in this study. The aim of the study is to identify genetic changes in the SOD1, C9orf72, FUS and TARDBP genes. identify in people with ALS who have no family history of ALS („sporadic ALS“).

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Figure: The ID-ALS study is offered at 13 ALS outpatient clinics in Germany. When considering the participation of ALS outpatient clinics in the ID-ALS study, it must be taken into account that the facilities joined the study at different points in time and participate in the study to varying degrees.

Due to the availability of a therapy against SOD1 mutations, knowledge about genetic mutations is gaining increasing therapeutic relevance. Among the mutation carriers in the ID-ALS study were 31 patients with mutations in the SOD1 gene (superoxide dismutase 1).

Of these 31 SOD1-ALS patients, 18 have so far been enrolled in a hardship program and started treatment with the drug Tofersen. An additional 7 SOD1-ALS patients from the ID-ALS study are in preparation for inclusion in the Tofersen hardship case program.

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Figure: Current status of the Tofersen hardship case program on 03/01/2023 with participants from the ID-ALS study.

Tofersen therapy is appropriate for patients who have a mutation in the SOD1 gene. Transfer to the hardship program is a direct benefit for participants in the ID-ALS study.

We would like to thank all the people who have participated in our genetic study so far and provided their data for research. The research project could only succeed through their support. The study is a good example of successful collaboration between specialized ALS centers, outpatient partners and an industry partnership with the Biogen company.

For more information about the purpose of the study, the process, the time involved, and the options for reporting results, see: https://www.ambulanzpartner.de/studie-id-als/

Thank you for your interest in this project.
Your APST Team