You may have just read about the different types of research and clinical trials, but how do researchers find the patients they need for these studies? A patient registry! This is a database containing a set of collected data on a population specific to a disease or condition, providing many benefits to both patients and researchers including:
For patients, who enrol on a registry: By having their data included on a registry, they may potentially be invited to participate in a clinical study or trial which could be focusing on either, Usher syndrome, their type of Usher syndrome, retinitis pigmentosa (regardless of gene mutation), and more.
For researchers: a patient registry would assist researchers in identifying patients that meet their criteria to participate in their clinical trial or study.
They may also be potentially valuable as a source of data that could be used for supporting regulatory assessments to faster meet an urgent and unmet need of this rare disease.
Without patients, a clinical trial will not happen.
Unfortunately, there are increasing concerns by many USH researchers that the number of USH patients on registries is too low (approx. only 1% of 400,000 people with Usher syndrome worldwide). This could seriously hamper USH clinical trials getting underway, or progressing through the stages to reach the finishing line. Usher Syndrome Ireland strongly encourage all USH patients to join an USH patient registry.
Currently, there are two registries that may be of benefit for USH patients to join. They are the My Retina Tracker® Registry, and the USH Trust. If you have any further queries or concerns, please get in touch.
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Dun Laoghaire, Co. Dublin,
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Reg Charity Number: 20206288
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