Make Your Story Count: Join a Patient Registry
Patient registries are a cornerstone in advancing new therapies. They are particularly powerful tools for obstacles faced by rare disease communities:
Small patient numbers, incomplete knowledge of the illness, spotty diagnostic expertise and difficulty conducting randomized clinical trials.
A large online SMARCB1-cancer patient database–fully compliant with data protection policies - allows different medical and research centers the world over to collaborate and share data. SMARCB1-cancers are not concentrated in one country.
We must facilitate learning networks and research collaborations between industry,
scientific researchers, regulators, clinicians, community organizations, and patients and families. This will :
Improve patient care
Allow the voices of families and patients to be heard
Propel drug development forward
Collecting IN ONE PLACE real-world data about SMARCB1-cancerhealth experiences, treatments, clinical careand outcomesisessentialfordriving therapeutic progress
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Over the last decade, cancer research has moved from an anatomic (organ based) perspective to a more transversal molecular understanding. This is why we need aPatientRegistrywithall SMARCB1-cancers, from different age groups and different parts of the body.Researchers need this information to find a cure.
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