In a story from MedCity News, while some studies grind to a halt with coronavirus restrictions, some of the medical world is using the new limitations to formulate creative solutions to helping patient groups, including promoting new apps or virtual tools to join researchers and patients together from their homes. The KCNT1-related epilepsy community is forming virtual connections during this quarantine online through a collaboration of companies with digital data gathering tools.
KCNT1-related epilepsy is a severe form of childhood epilepsy. It’s known to have a genetic component related to mutations in the KCNT1 gene, but little more has been discovered. The non-profit KCNT1 Foundation will become a beneficiary of tools to gather patient information and funnel this data to research driven purposes through their collaboration with LunaPBC and Genetic Alliance.
The three groups are collaboratively creating an online platform for patients and families to share their information to aid researchers in designing their studies and to form a database of patients for researchers to find study participants from. The Genetic Alliance will share their design tools to consolidate the data, while LunaBPD will incorporate that information for analytical models, available to researchers upon request and patient approval.
Patients Collaborate With Health Data Platforms
Through this collaboration, Genetic Alliance will equip the advocacy group with tools to help themselves design a patient registry and to create a more robust network to connect patients with researchers.
Sharon Terry, the CEO of Genetic Alliance said to Medcity News:
“Parents are full collaborators in design and implementation in these studies.”
She explained that they will be empowering these groups with better technology and networks:
“(The KCNT1 Foundation) has had an advocacy group for some time. What we’re doing is giving them the heavy lift tools -biobanking, registries, and an institutional review board – so they don’t have to reinvent the wheel.”
The third collaborator, LunaPBC, collects patient data to use for research, while using patient guidance to steer research goals and guaranteeing health data is only used as the patient allows. They created the system to prioritize patient input throughout the entire process of research. LunaPBC gives shares in the company in exchange for the patient data, which could include DNA tests or family background. LunaPBC never releases the data, but researchers are able to inquire about specific questions or analytical models to aid their study. They will work with the KCNT1 Foundation which will give the patient and family members the option to share their information or participate in the research studies. This brings patient families and researchers closer together, enabling them to collaborate more in the research design so the end goal more closely aligns with the patient’s desires.
Darn Barry, President of LunaPBC, explained while the new focus on virtual care has amplified their project, bringing in patients virtually was already a goal they had in mind. Now, Barry said,
“It’s never been clearer that bringing trials to the home is much safer for people. Let’s talk in the case of pediatric epilepsy. They have many seizures per day. …Can you imagine as a parent putting these kids on long-distance rides or airplanes for a study? You don’t need COVID to see that’s a bad idea.”
