ProQR Therapeutics, a company dedicated to changing lives through the creation of transformative RNA medicines for severe genetic rare diseases, announced its participation in the Foundation Fighting Blindness My Retina Tracker Program, a collaborative, open-access program run by Blueprint Genetics and InformedDNA providing no-cost genetic testing and genetic counseling for individuals with a clinical diagnosis of an inherited retinal disease (IRD) such as Leber congenital amaurosis (LCA) and Usher syndrome.
Many people diagnosed with an IRD have not received genetic testing. In absence of knowing the genetic mutation, eligibility for clinical trials or available treatments is more difficult to determine. Genetic testing in the My Retina Tracker Program is performed by Blueprint Genetics and tests a broad panel of known mutations causing IRDs, including mutations causing LCA10, Usher syndrome, and retinitis pigmentosa for which ProQR is developing medicines. As a partner of the program ProQR has access to expert physicians and de-identified data from specific participating IRD patients, which would facilitate efforts to advance new treatments for IRDs.
Daniel de Boer, Chief Executive Officer of ProQR, said, “We are honored to be the first industry partner for the My Retina Tracker Program as we strive to be at the forefront of the IRD field with a patient-focused approach. Genetic testing is crucial to receiving an accurate diagnosis and to then move forward with the best care.”
“The My Retina Tracker Program is a key initiative that supports the development of treatments and cures for inherited retinal diseases and we are delighted to be expanding our partnership with ProQR”, says Brian Mansfield, Executive Vice President Research, Interim Chief Scientific Officer of the Foundation Fighting Blindness. “As part of the program, the My Retina Tracker Registry has over 15,000 patients registered, which is the most comprehensive international patient database with individuals affected with an IRD.”
“With over 7,000 patients tested to date, and hundreds more tested monthly, this program provides IRD patients with the highest-quality test available in the market, while setting a high standard for patient data privacy practices. We are happy to have ProQR join our efforts to provide IRD patients with easier access to genetic diagnostics, improve access to clinical trials and facilitate therapeutic development in IRDs associated with CEP290, RHO and USH2A genes. The My Retina Tracker Program is currently the most effective pathway for Biopharma to enhance patient identification,” said Tero-Pekka Alastalo, Executive Director, Medical at Blueprint Genetics.