Phase 2 Open-label Extension Study of AOC 1020 in Participants With Facioscapulohumeral Muscular Dystrophy (FSHD)

This study is specifically designed for people who have already finished the first AOC 1020 study. To be considered, your doctors in the first study must believe you tolerated the medicine well and followed the study rules properly. You must also be able to understand and sign consent forms, and be willing to stick to all the study appointments and rules.

There are also some reasons why you might not be able to join. For example, if you are pregnant, planning to get pregnant, or breastfeeding, you cannot join. You also need to be able to use effective contraception if needed throughout the study. If your doctor thinks you have any new or worsening health issues that would make it unsafe for you to take part, or that would make it difficult for you to complete the study, you would also not be eligible. This is to make sure the study is as safe as possible for everyone involved. Being unable to walk 10 meters without help specifically because of FSHD progression would not automatically stop you from joining.

If you join this study, you will receive the AOC 1020 medicine through a drip into your vein. This will happen roughly every 6 to 7 weeks. The active treatment part of the study will last for about 46 months (a bit under four years). After you finish receiving the medicine, you'll have an 18-week follow-up period where the study team will continue to check on your health and any side effects. In total, your involvement in the study could last up to about 50 months, which is just over four years. During this time, you will have regular visits to monitor your health, how you're feeling, and to ensure the medicine is being tolerated well. The study team will also keep track of any other medicines you take and, for women, your pregnancy status.