Our registry, GRIN, has been central to our patient centered research initiatives for over 6 years. The ability to have real-time access to important patient reported natural history data has been a game changer for HNF’s research, industry and academic partners. Originally hosted using 3rd party software, in 2019 HNF migrated GRIN onto our own IRB approved, HIPAA compliant platform. Built to our own specifications, GRIN allows us to quickly analyze data to uncover insightful correlations between genotypes, phenotypes, comorbidities and other important patient data.
GRIN has played a critical role in identifying important issues related to the CMT patient experience, revealing new areas to explore and research. When pain was noted by 65% of patients with inherited neuropathies, HNF quickly sprang into action, hosting a dedicated summit on patient pain in 2017, as well as advocating for pain scales to be considered as a secondary endpoint for clinical trials. “Without real time access to this critical data point, we wouldn’t have been able to demonstrate the importance of this issue to our industry and research partners,” says Joy Aldrich, HNF’s Patient Advocacy Director. “GRIN also helped us effectively convey the CMT patient’s disease experience for our Externally-led, Patient Focused Drug Discovery meeting with the FDA in 2018.”
GRIN has also facilitated recruitment for the latest clinical trials by pinpointing ideal candidates with speed and accuracy. Future innovations for the platform include an interactive patient portal, the integration of de identified data with other partner consortiums, and the collection of longitudinal patient data. GRIN also supports the CMT&Me app, sponsored by Pharnext, by identifying patients that are willing to participate in that important digital lifestyle study
To participate and accelerate research, join GRIN. www.hnf-cure.org/registry
Contact: Allison Moore [email protected]