Join the Registry
By completing the patient registry, you provide invaluable information about the symptoms and progression of HSPB8 myopathy, that cannot be obtained otherwise. Data collected is crucial in determining effects of potential therapies.
Only the patients know what it is like to live with HSPB8 Myopathy
What is a patient registry?
A patient registry is a structured database that collects standardized information about individuals diagnosed with a specific disease or condition. It serves as a vital resource for researchers, clinicians, and policymakers to gather comprehensive data on disease characteristics, treatments, and outcomes.
Why is it important to fill out a patient registry and update it annually?
Filling out a patient registry and keeping it updated annually is crucial because it helps researchers and healthcare providers understand the natural progression of the disease, evaluate treatment effectiveness, and monitor long-term outcomes. By contributing your information regularly, you directly support research efforts that can lead to advancements in treatments and care strategies for the disease.
What is CoRDs (Collaboration of Rare Diseases at Sanford)?
CoRDs is an initiative led by Sanford Research that aims to unite individuals affected by rare diseases, researchers, and healthcare providers. It provides a platform for patients to securely contribute their health information to a centralized registry. CoRDs fosters collaboration among stakeholders to accelerate research, improve disease management, and ultimately find cures for rare conditions
Is the registry only in English?
At the moment the registry is available in English and Japanese
How do I register?
By clicking this link
