About our partner: Ultragenyx is a biopharmaceutical company committed to bringing patients novel products for the treatment of serious rare and ultra-rare genetic diseases, including CDKL5 deficiency disorder. Ultragenyx is currently in the early, pre-clinical stage of its CDKL5 deficiency disorder program and is interested in better understanding the clinical features, the natural history and the progression of the disease over time.
Through this research, Ultragenyx aims to:
- Understand the diagnosis and medical journeys of patients living with CDKL5 deficiency disorder
- Learn about clinical testing, disease management and clinical milestones of CDKL5 deficiency disorder
- Understand CDKL5 deficiency disorder symptoms, health complications and other disease-related conditions
- Understand the use of medications and treatment plans among patients diagnosed with CDKL5 deficiency disorder
- Learn what types of healthcare providers and specialists that patients visit, and the types of medical tests used to diagnose and monitor CDKL5 deficiency disorder
AllStripes is a platform that makes it easy for rare disease patients and caregivers to contribute to drug development research from home.