Why join a patient registry?
Joining a patient registry especially for those with Usher syndrome could provide benefits to both patients and researchers.
For patients, by having their details included on a database they have the potential opportunity of being informed of any clinical trials that might be relevant to them as well as results from relevant trials. Another potential opportunity is a patient could be invited to participate in a clinical trial if deemed suitable.
For researchers, a patient registry provides immediate access to patients with Usher syndrome, and could help to identify those who may meet their criteria to participate in a clinical trial.
However, if the number of people on the registry is too low, then a clinical trial could be severely impacted as researchers would struggle to find participants for their clinical trial. This is why we strongly encourage everyone to join a patient registry to show that there are so many of us in need of a cure, and it also provides a way for researchers to find us. The more people on a specific disease registry, the louder and more powerful the call is for the urgent need of a clinical trial.
Information on patient registries is kept strictly confidential, and is never shared without prior permission from the patient. Only the patient registry contacts the patient for information, requests, or invitation to participate in a trial.
If you are invited to participate in a trial, the decision to do so is entirely your decision. We strongly recommend that you do your research or seek advice from your doctor before agreeing to participate in any trial, assess both the pros and cons, and examine the details of the trial on the ClinicalTrials.gov website. All trials carry some risks, but without trials and people’s participation we will never find the cure.
List of patient registry:
USH Trust Registry: The Usher Syndrome Coalition maintains the largest database of people with Usher syndrome worldwide, providing a bridge between researchers and the Usher syndrome community.
By registering in the USH Trust,you will become part of the largest global network of individuals with Usher syndrome. You will have the opportunity to contribute to the world’s understanding of Usher syndrome, will be ensured of receiving information on the latest research, treatments and clinical trials, and will be the first to learn about opportunities to participate in research.
Please consider registering. You are the key to fully understanding Usher syndrome and finding treatments and a cure.
MyRetinaTracker: My Retina Tracker is a free on-line registry provided by the Foundation Fighting Blindness as part of its mission to drive the research that will provide preventions, treatments and cures for people affected by retinitis pigmentosa, macular degeneration, Usher syndrome and the entire spectrum of inherited retinal degenerative diseases.
CRUSH Study: Stichting Ushersyndroom will finance the start of the CRUSH study, a natural development study into Usher syndrome. With this the basis can be laid for future trials. Patients can, with their own files at hand, register for the CRUSH database and so bear the responsibility for the solution and the unraveling of the disease that leads to deafblindness themselves. The CRUSH study fits in with the mission of Stichting Ushersyndroom: ‘A treatment for Usher Syndrome in 2025!’