When scientific studies are representative of people’s lives, then the discoveries that result will be more broadly applicable to and successful for all. This means we, as study participants and partners, must be able to engage directly with researchers while preserving our privacy. We’re excited to share a new LunaDNA innovation that achieves just that.
The traditional study protocol lacks direct participant engagement and thus limits high-quality, long term data collection, restricts invitations to new studies and clinical trials, and jeopardizes the preservation of personal data privacy. Often, researchers resort to gathering retrospective, fragmented data which misses the critical context of lived experiences of those managing a health condition. Through Luna, we are enabling people to share what their needs and priorities are for improving health and enabling researchers to react to what they are learning, and nimbly adjust their data collection to dig deeper in areas that are showing significant importance.
With study participants more directly involved, researchers can follow up with them to ask for additional information to augment their study, invite them to join new studies and clinical trials, remind them to complete study requests, and share insights from their analyses.
The ability to dynamically reconnect with study participants while they maintain their anonymity is a challenging problem for most platforms because they were not built in a participant-centered manner. LunaDNA was built with privacy-by-design and with individual data control compliant with modern consumer privacy laws like General Data Protection Regulation (GDPR) and California Consumer Privacy Act (CCPA). LunaDNA enables an intricate connection of participants and their shared data that protects the participants’ privacy, secures their health data, but also enables the possibility of privacy-protected communication between researchers and participants.
What can participants expect?
People control which researchers can contact them based on the communities and studies they join. They can also choose to allow any researchers to contact them, which provides them with opportunities to join studies and clinical trials. When a researcher contacts them, individuals receive an email from LunaDNA informing them they have a message in their account. Once they login, they can access the researcher’s message in their notification center.
To drive better health breakthroughs faster, people must be at the center of research, working alongside researchers to find the answers to our greatest health questions. Recontact Agent™ is one of many LunaDNA solutions that are reshaping the way research is done.
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Luna’s suite of tools and services connects communities with researchers to accelerate health discoveries. With participation from more than 180 countries and communities advancing causes including disease-specific, public health, environmental, and emerging interests, Luna empowers these collectives to gather a wide range of data—health records, lived experience, disease history, genomics, and more—for research.
Luna gives academia and industry everything they need from engagement with study participants to data analysis across multiple modalities using a common data model. The platform is compliant with clinical regulatory requirements and international consumer data privacy laws.
By providing privacy-protected individuals a way to continually engage, Luna transforms the traditional patient-disconnected database into a dynamic, longitudinal discovery environment where researchers, industry, and community leaders can leverage a range of tools to surface insights and trends, study disease natural history and biomarkers, and enroll in clinical studies and trials.