Are You on the Clinical Trial Radar Screen?
Therapy developers use the My Retina Tracker Registry to recruit for human studies of emerging therapies
The Foundation Fighting Blindness launched its free, global patient registry — available at www.MyRetinaTracker.org — to connect people with inherited retinal diseases (IRDs) with researchers and companies developing therapies. More than 16,000 people are now in the registry and the Foundation is working hard to boost that number.
“It is important to remember that IRDs are rare, affecting about 200,000 people in the US, and it is often challenging for investigators to identify patients for their clinical trials,” says Todd Durham, PhD, vice president of clinical development at the Foundation. “For companies who partner with the Foundation, My Retina Tracker Registry serves as a hub for clinical trial recruitment. Even if a therapy developer isn’t planning to launch a trial immediately, they often want to know that patients for their study will be available down the road.”
My Retina Tracker Registry was recently upgraded to be more user-friendly, including for those with vision loss. Much of the data entered by the patient is done through pull down menus.
When researchers work with the Foundation to recruit for studies, Foundation staff send contact letters to potentially eligible participants based on information recorded in their Registry profile. It is then up to the patient to contact the researcher if interested in the study. Researchers never have access to personal information — only de-identified disease information may be provided to them.
While a patient’s genetic information is good to include in their record, the patient doesn’t have to know their IRD gene to be in the registry. But the more information and data that can be included, the better.
“We strongly encourage registrants to include as much information in their records as possible and provide any updates as their vision or medical history changes,” says Dr. Durham. “The more complete the record, the more likely a patient will come up in a researcher’s search.”