ProQR Therapeutics Teams Up with the Foundation Fighting Blindness and Blueprint Genetics to Support the My Retina Tracker® Program for People Living with Inherited Retinal Diseases

February 6, 2020
  • My Retina Tracker Program is the highest volume IRD genetic testing program in the US

[Helsinki, February 6, 2020—] ProQR Therapeutics N.V. (Nasdaq:PRQR), a company dedicated to changing lives through the creation of transformative RNA medicines for severe genetic rare diseases, announced today 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’s congenital amaurosis (LCA) and Usher syndrome, amongst others.

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 deidentified data from specific participating IRD patients, which would facilitate our 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,” said Brian Mansfield, executive vice president research and 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.

About My Retina Tracker® Program

The My Retina Tracker® Program offers open access, no-cost genetic testing and genetic counseling for individuals living in the United States with a clinical diagnosis of IRDs. The program offers people with an IRD access to the highest quality genetic testing and genetic counseling. InformedDNA provides genetic counseling by certified genetic counselors with IRDs expertise. Although it is not required for participation, this program offers an easy opportunity to join the My Retina Tracker Registry. This gives individuals the opportunity to contribute to focus groups, patient journey analyses, research studies, and the opportunity to be enrolled in relevant natural history studies and clinical trials.

The program provides patients with a 285-gene panel targeting relevant genes associated with IRDs. Unique features of the panel include full RPGR coverage, high resolution copy number variant detection and comprehensive coverage of IRD-related noncoding variants. Customized detection of non-coding variants is critical for diagnosis of IRDs, especially with genes such as USH2A, CEP290 and RHO. The current panel will include mitochondrial DNA testing to further enhance the clinical utility and quality of the test.

For more information on the My Retina Tracker® Program, please visit 

About ProQR Therapeutics
ProQR Therapeutics is dedicated to changing lives through the creation of transformative RNA medicines for the treatment of severe genetic rare diseases such as Leber’s congenital amaurosis 10, Usher syndrome and autosomal dominant retinitis pigmentosa. Based on the unique proprietary RNA repair platform technologies, they are growing their pipeline with patients and their loved ones in mind.

About the Foundation Fighting Blindness
Established in 1971, the Foundation Fighting Blindness is the world’s leading private funding source for retinal degenerative disease research. The Foundation has raised more than $760 million toward its mission of accelerating research for preventing, treating, and curing blindness caused by the entire spectrum of retinal degenerative diseases including: retinitis pigmentosa, age-related macular degeneration, Usher syndrome, and Stargardt’s disease. Visit for more information.

About Blueprint Genetics
Blueprint Genetics is one of the fastest growing genetic diagnostics businesses globally in the field of clinical genetic testing of rare inherited diseases. The company is based in Helsinki and Seattle, with a customer base spanning over 70 countries.

Contact information:
ProQR Therapeutics N.V.
Sara Zelkovic, LifeSci Public Relations
T: +1 646 876 4933

Blueprint Genetics
Tero-Pekka Alastalo, CMO and co-founder,
Juulia Simonen, Communication Manager,

Foundation Fighting Blindness
Chris Adams, VP Marketing & Communications, +1 410 423 0585,

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