About Patient and Caregiver Outcomes in Rare Disease
We provide investigators consultation and assistance planning and building disease-specific patient registries. We help investigators create useful and flexible patient registries to learn about the real-life consequences of disease.
Translational research can be hampered by incomplete data on the consequences of a disease for patients and caregivers, and rare diseases are especially vulnerable to this problem. Clinical researchers seeking this information need access to adequate samples of patients and caregivers, an expensive and time-consuming process.
Survey methodology provides a cost-effective way of gathering data to supplement or inform data collected directly by medical professionals. Through its previous work, RTI has shown that large-scale survey registries can generate new and accurate descriptions of the disease experience for patients and caregivers.
Drawing on this work, PCORD helps researchers to develop registries and surveys for rare diseases so they may gain insight into previously unknown patient and caregiver outcomes.