We provide data analytics & research expertise to non-profit patient advocacy groups to help them do what they do best; change lives for the better
Our Approach
Whether through medical conferences, peer-reviewed manuscripts, and/or social media via our Rare Awareness Radio platform, we can help you spread your message.
We understand data and the importance of standardized processes and output. Our expertise can smooth the collaborative research process.
At the heart of our mission is prioritizing patients and caregivers in research. We are committed to making sure their voices are included at every stage of the process.
Our Services
Data Collection
Survey, case form, and interview guide development, merging of external healthcare data (e.g. from data aggregators) with foundation data, establishing disease registries.
Data Management
Data management (quality assessment, transformation, standardization, learning) necessary to enable more effective information gathering and groundwork for research studies.
Research and Communication
Data visualizations and tabulations for empowering organizations to leverage data more readily in achieving their advocacy goals.
Research Design (feasibility, study protocol & statistical action plan), conductance (analyses), review (summary tables), and dissemination (study report, white paper, press release, conference submission, online or conference presentation, peer-reviewed manuscript, etc.).
Advisory
Review of funded studies (e.g. study protocol review, publication planning) or services sought by for-profit organizations (e.g. clinical trial recruitment, patient feedback/guidance) to aid foundations in understanding the benefits or lack thereof to patients and foundations.
