v-ATPase Alliance and RARE-X Data Collection Program launching March 19th!

Please join us in watching or rewatching the Launch Party of v-ATPase Alliance Data Collection Program, in collaboration with Rare-X. Reach out through any of our channels if you have any question or need help with the process.

What is a Patient Registry / Data Collection Program with RARE-X?

A patient registry is a systematic collection of standardized information about individuals with a specific medical condition. These registries are organized databases that gather and store data on patients who share a common diagnosis or condition. The information collected in patient registries typically includes demographic details, medical history, clinical outcomes, treatments received, and other relevant data.



Why is it important?

Registries provide valuable data for research and clinical studies, allowing researchers to analyze trends, outcomes, and the effectiveness of treatments. They can help identify patterns and contribute to evidence-based medicine. Registries also allow for the long-term tracking of individuals with specific conditions. This longitudinal data can provide insights into the natural history of the disease, the impact of interventions over time, and the overall health and well-being of the patient population.



Pharmaceutical companies and medical device manufacturers may use patient registries to gather data on the natural history of a disease to assess safety and effectiveness of new drugs or devices. This information is important for regulatory submissions and post-market surveillance. Similarly, healthcare providers can use patient registries to identify areas for improvement and enhance the quality of care.



And last but not less important, patient registries are tools that we, the community, can leverage to understand more about the disease and feel empowered to have informed discussions with physicians and other health professionals, as well as use them to raise awareness and involve the research community, advocate for policy changes, and enhance overall care.



What does this mean to all of us?

A patient registry is as valuable as the level of participation and compliance from all the community. The more information and details we can provide to the RARE-X Data Collection Program (DCP), the richer the data set will be. Having a broad participation from the community is even more important in the case of ultra-rare diseases where the numbers are very low to begin with.



We are excited with this novel instrument we're building for the v-ATPase community and hope you'll join us creating the first patient registry for v-ATPase disorders and be a crucial part of advancing medical research and awareness! The study is free for participants; you can conveniently participate from home (It's all ONLINE); your data is YOURS and you can withdraw from the study at any time removing all the data; all data is treated in aggregate form, ensuring complete de-identification (no personal information is shared).



Next Steps

The Data Collection Program at RARE-X is opening to our families next week! We are hosting a "launch party" zoom call where RARE-X will present the platform and answer questions about how to get enrolled and begin to fill out the health surveys. While we highly encourage as many people to attend live as possible, we understand that it will not be possible for everyone's schedule, so a recording of the meeting will be made available afterward. Also, language translation will be available live during the meeting using automated captions in Zoom. Please do not let language barrier stop you from attending and learning more.