Cure RTD Registry
The purpose of the Cure RTD Registry is to amass information and biological specimens from individuals with Riboflavin Transporter Deficiency (RTD) into a single database which will be utilized by researchers to better understand RTD. Through our families’ contribution to the registry, knowledge is gained, research is facilitated, and differences are being made.
The Cure RTD Registry empowers every person who has RTD and their family members around the world to make a difference in the fight to conquer RTD. By participating in the registry, and sharing your own unique experience both before and after diagnosis and treatment, you are contributing to a global database about the accessibility of diagnosis, care and treatments, and disease severity of RTD. The Cure RTD Registry is a centralized resource that is vital to helping researchers learn more about RTD, accelerating the development of new research and treatments, identifying issues that need research, and improving the care of all those with RTD. As a participant in the registry, you will have access to information about new research for RTD and ways to participate in studies and clinical trials.
We appreciate the importance of global collaboration. One of the goals of the Registry is to enable researchers from around the world to work together to speed research progress. The Cure RTD registry connects all those interested in accelerating RTD research – affected individuals, families and researchers – with a resource that has never before been available in one place.
It still remains unclear if all individuals carrying a single SLC52A2 or SLC52A3 pathogenic mutation (“carriers”) remain unaffected over a lifetime. Participation in the Cure RTD registry by unaffected family members that are known RTD carriers is therefore also important. Such individuals can shed light on the mechanism of RTD and point the way to treatments.
Every person counts in the fight against RTD. Many more research projects and avenues of investigation will result from RTD patients and their families signing up and becoming involved.
To learn more about the Cure RTD Registry:
Phone: (001) 403 244 4549