Patient Registry

Join the Fight Against CRB1 Retinal Dystrophy

Every patient and family affected by a rare disease holds a key piece of the puzzle. By joining a patient registry like the Coordination of Rare Diseases at Sanford (CoRDS), managed by Sanford Research, you contribute to a brighter future for individuals with CRB1-related retinal dystrophies (CRB1 LCA/RP) and other rare conditions.

Enroll in the CoRDS Patient Registry today!

Why Join the CoRDS Patient Registry?

For Patients & Families:

1. Advance Research & Treatment – Your participation helps researchers understand CRB1-related retinal diseases better, leading to potential new treatments and therapies.
2. Connect with Experts – Registries provide a vital link between patients and researchers, ensuring you stay informed about the latest advancements.
3. Access to Clinical Trials – By joining, you increase the chance of being contacted for relevant clinical trials and studies that could lead to new treatments.
4. Build a Stronger Community – By participating, you help create a network of families and individuals facing similar challenges, fostering support and shared knowledge.
5. Secure & Confidential – Your information is stored safely and only shared with approved researchers dedicated to advancing treatments.

For Research & Treatment Development:

1. Essential Data Collection – Patient registries provide critical, anonymized data that researchers and clinicians need to understand disease progression and variability.
2. Accelerate Medical Breakthroughs – The more data available, the faster researchers can develop targeted treatments and potential cures.
3. Support Drug Development – Pharmaceutical companies rely on patient registries to guide research efforts and bring treatments to market.
4. Improve Disease Awareness – Registries help healthcare providers recognize and diagnose rare diseases earlier, leading to better patient outcomes.
5. Stronger Case for Funding – A robust patient registry demonstrates the need for funding and grants, increasing support for research initiatives.

By joining CoRDS, you are taking an active role in finding solutions for CRB1-related retinal dystrophies and other rare conditions. Every data point matters, and together, we can pave the way for groundbreaking discoveries and improved patient care. Don’t wait – sign up today and be a part of the change!