Worldwide research study for patients with USH 1c

If you have Usher Syndrome Type 1C, your participation is critical to developing treatments. History studies are an essential part of bringing treatments to patients. As researchers get closer to developing therapies that will help slow, stop or reverse the degeneration of sight caused by Usher Syndrome, and specifically USH 1C, it is important to understand the history of progression of the disease in patients in order to confirm the effectiveness of those treatments.

There are 3 natural history studies that are ongoing for individuals with USH1C. The entry level study is open to all ages and does not require travel. Participation involves questionnaires and requesting medical records that can be done over the phone, via email, and/or video conferencing.

The other 2 studies – one for vision and one for balance – require travel to the US or Canada to see the doctors that specialize in Usher syndrome.

Usher 2020 Foundation are supporting therapies that include gene augmentation, drug therapies, and stem cell therapies. To move these treatments to clinical trials, they will need a thorough understanding of Usher Syndrome patients, and for some of these treatments, specifically USH 1C patients, the worldwide prevalence, and the clinical history of the disease.

Do you want to help and participate in this study? Then read the letters below and contact Dr. Jennifer Lentz.

Read more about the history study for USH 1c.
Read the letter here to participate.