News
Research
Stories, statements and updates from Rett Syndrome Europe and our member associations across Europe.
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Study about Males with Rett Syndrome
Dr Tim Benke, Medical Director of the Rett Center of Excellence at Colorado Children’s Hospital is the lead Principal Investigator in a study that is seeking to understand the lived experience of Males with Rett syndrome via their parent report. He would love to have responses from parents in Europe COMIRB: 23-0075PI: Dr. Tim BenkeV.…
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Jan 24 Update from Taysha
Official press release from Taysha giving more detail of their REVEAL paediatric gene therapy trial with sites in the US and UK.
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Taysha Gene Therapy Trial Update
Taysha announce details of their REVEAL paediatric study in the US which is now recruiting patients.
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Taysha expand age group in gene therapy trial in Canada to 12+ years.
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Latest update from Taysha gene therapy
Taysha today shared the latest update on their gene therapy programme with the second person now having received the therapy and a third planned for later this year. You can read their announcement and their letter to Rett community bellow.
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Latest Update From Taysha Gene Therapy Programme
News on the first patient dosed with their gene therapy and next steps in respect of expanding the trials…
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Latest Update From Taysha Gene Therapy Programme
Taysha have shared the news today that they have been given the all clear to continue with their plans to dose the second adult with Rett syndrome in their gene therapy trial in Canada. You can read their letter here.
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The Burden of Illness Study in Rett Syndrome
Following our Network Support and Research Event we would like to share a video of Walter Kaufmann presentation “Burden of Illness in Rett Syndrome: Initial Evaluation of a Disorder-Specific Caregiver Survey”. In this talk, Walter Kaufmann will present an overview of the Burden of Illness in Rett Syndrome survey. Previous studies have shown that individuals…
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Update from Anavex Life Sciences clinical trial
Anavex Life Sciences Corp. announced the completion of the ANAVEX®2-73 (blarcamesine) U.S. Phase 2 study in Rett syndrome. The Company expects to announce topline results from this study in the next quarter. ANAVEX®2-73 is an orally available, small-molecule activator of the sigma-1 receptor which, data suggest, is pivotal to restoring neural cell homeostasis and promoting…
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Taysha administered the first dose of investigational gene therapy drug
These are definitely exciting and hopeful times for Rett community. Taysha Gene Therapies have announced that the first patient was dosed with the investigational gene therapy, TSHA-102, in the REVEAL Adult Study, a clinical trial for females 18 years and older living with Rett syndrome. As things move forward, we´d like to share the letter…
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