Archive for June, 2019

Transferring Sponsorship of a Clinical Study: A lesson on how rare disease drug developers can work together for the good of an underserved rare disease community

    On June 20th, 2019, wonderful news was announced on the Association for Creatine Deficiencies’ (ACD) website and ACD Facebook page that Lumos Pharma has transferred the sponsorship role of the Vigilan Study (Observational Study of Creatine Transporter Deficiency-CTD) to Ultragenyx Pharmaceutical Company. https://creatineinfo.org/wp-content/uploads/2019/06/Vigilan-Update-June-20-2019-Transfer-ACD-Letter.pdf “The ongoing natural history study, Vigilan, is crucial for the...Read More