Leaders with the Fibrous Dysplasia Foundation and the National Organization for Rare Disorders recently launched a new study with the goal of researching fibrous dysplasia/McCune-Albright syndrome (FD/MAS).
Through the study, doctors will develop a platform for patients worldwide. This platform will allow them to exchange information about the syndrome.
“The FD/MAS Patient Registry is the first FD/MAS research project in history where families and researchers worked together to identify research objectives and to design a study that could meet those objectives,” Catherine Fairchild, president of the Fibrous Dysplasia Foundation, said. “The study was painstakingly developed over several years in collaboration with leading international clinical research centers in order to optimize the scientific value of the data.”
Scientists hope that exchanging this information in the study, which began on Oct. 31, will create an international resource that will help with future research projects.
“NORD’s natural history studies platform empowers patients and families to drive research and eliminate some of the unknowns that still exist in rare diseases,” Peter Saltonstall, NORD president and CEO, said. “We are glad to be working with the Fibrous Dysplasia Foundation on this project and look forward to capturing the diverse experiences of patients living with this complex disease.”
