Disease advocacy organizations (DAOs) are a critical player in translational research. DAOs have the power and drive to mobilize participants to become part of the solution in genetic disease research and clinical trials. DAOs are a community of trust, where individuals share experiences, and can access relevant resources. DAOs are the perfect nexus for the collection of data that is crucial for research. Many times, DAOs focus on one condition, and their resulting data collection is somewhat of a silo of that disease only. However, building a clinical registry beyond one disease brings in special concerns. Individuals may not feel comfortable with the idea of their data going beyond their community, whether it is a disease, geographic or ethnic community. In addition, DAOs have concerns for cross-disease data sharing and common registries and feel these lead to decreasing membership and limited control over their participants’ data. There will be pain in the transition, but it is critical that we empower the very individuals who donate this data to decide where and with whom it will be shared. Interventions will not be simply disease based: biological pathways, phenotypes, and systems will be the road to successful therapies and treatments.
Reg4ALL is a unique registry platform that enables individuals to control their personal health data and make well informed decisions about who accesses the information for clinical research. DAOs that build cohorts for specific genetic diseases can use Reg4ALL as an ideal platform to increase their member base and data collection.
- Reg4ALL empowers DAOs to run a registry in a simple and safe way.
- Reg4ALL helps DAO provide their members with tools to set their sharing, privacy and data access preferences on a granular level along with high level of data security. Genetic Alliance’s partner Private Access provides data security algorithms that de-identify participant data based on chosen privacy settings. DAOs can sustain high degree of member confidence due to this innovative layer of privacy and security provided in Reg4ALL.
- Reg4ALL provides a platform for DAOs to reach out to the public and recruit more members that are affected with the same disease or condition. Reg4ALL provides a gamified version of questionnaire and feedback based on participant survey. If participants choose to sign up and share data, DAOs can contact the participants and encourage them to become members of the DAO.
- Reg4ALL provides options for cross-disease research (based on individual consent). DAOs that are looking for expansion into other diseases with common characteristics, or conditions that are part of a continuum or syndrome, can work with the Reg4ALL members for advancing their research cause.
- Reg4ALL enables DAOs to link the right participant with the right researcher for developing better diagnostic strategies and clinical trials. Reg4ALL and DAO collaboration can help in creating a larger participant base with extensive family history of health and disease across multiple generations.
- Reg4ALL has a very affordable, flexible and scalable fee and subscription based structure for DAOs.