Registries4All Initiative on Luna
Genetic Alliance began the Registries4All initiative to democratize and improve research for all rare and common diseases. The initiative continues to evolve. Now, partnering with Luna, Registries4All has established a simple path for you to create your registry on a platform that puts the privacy and safety of the participants first. Setting up a registry for your organization or community has never been easier.
What are registries?
A registry is a database that collects and stores information about patients diagnosed with a specific disease, genetic disorder, or medical condition. To be most impactful for research, the following should be built into any registry: chain-of-custody, privacy law compliance, data validation, and other elements of quality control.
What are the benefits of having a registry?
Allow the voice of patients, caregivers, and their support network to be heard
Enable better understanding of how the condition progresses over time and what symptoms most impact quality of life
Ultimately, they increase the probability that a treatment or cure may be developed
How do I get started?
CREATE YOUR COMMUNITY
It’s FREE for non-profit advocacy organizations and Facebook groups (with no associated organization) to set up a community on Luna. It’s SIMPLE to get started – click the link below and provide a few details and we’ll do the rest.
Not ready yet? Learn more about communities on Luna.
RECRUIT & COLLECT DATA
Use the already IRB-approved “Tell Us About Yourself” study on the Luna platform to get started without worrying about study design and IRB approvals yourself. It helps you collect the basics from your community, such as demographics and family medical history.
UNDERSTAND YOUR COMMUNITY
Listen to your community to understand their priorities and pain points. Align data collection to the priorities of your community and research collaborators. We can help – use Luna’s Community Driven Innovation™ service to prioritize your research focus, help with resource and support planning, and prepare for FDA PFDDs meetings.
DESIGN YOUR OWN STUDY
When you’re ready you can design your own study to collect information more specific to your community’s condition or area of interest. If you need help, Genetic Alliance and the Genetic Alliance Institutional Review Board (IRB) can help.
AND MUCH MORE…
As you expand your registry and your community, you will be able to support publications, research collaborations (with industry, academic, medical research groups, etc.), consider biobanks and biospecimen collection and much more.
Get started today. It’s simple and fast!