Genetic Alliance Salons
Registries and Natural History Studies
Registries are becoming an important tool to accelerate clinical research. We know that well-characterized cohorts, with clearly established clinical endpoints, are essential for clinical trials. Creating a registry is often the first step in establishing the cohort for clinical trials. Join us in an open discussion about registries and natural history studies. How has your organization been successful? Where does your organization want to go? What else is needed? What is important to your community? How can we share lessons learned and best practices?
May 17, 2012, 4:00 p.m. - 6:00 p.m.
What is a Salon?
As a means of transformative visioning, Genetic Alliance regularly holds salons, similar to the 17-19th century gatherings of intellectuals and other eminent individuals. Salon participants are not chosen for the expansiveness of their resumes, but for their character and reputation as open-minded, curious individuals who are willing to explore all sides of an issue. Salons are fueled by the mechanism of open space, allowing unfettered thought and discussion; we leave our certitude and intellectual property at the door. We need to think together in an environment that offers permission and demands attention. Through conversation, we realize more than any one of us could have done alone. This is our chief aim: transformative knowledge through conversation with others. We have held many of these salons. They are an increasingly useful way to practice openness and transformation; dynamic interaction around rigorous topics inevitably leads to disruptive and exciting solutions.
Topics from Recent Salons
Throughout 2011 we held Innovation Salons in Seattle, WA, New Rochelle, NY, Vancouver, Canada, and San Francisco, CA. We live in an age in which innovation abounds. We experience its products in the networking devices we use every day. It influences travel, health, entertainment, and education. Open discussions ranged from the areas where innovation is needed, to how each of us is an innovator, and what dreams we have for better systems. In this unique venue, we explored innovation within everyone present and beyond!
On December 13 and 22, 2010, Genetic Alliance held teleconferences on the topic of “Translational Research Enterprise—What Are We To Do?” We used our dynamic salon format, coupled with online streaming technology, so that everyone could participate either in-person or via webcast. No one is surprised in the 21st century when disease advocacy organizations are at the center of initiating, firing up, accelerating, and retooling research on a disease. What was once novel is common. However, all of us could use better systems to capitalize on the resources we bring to the table.
In winter 2010, Genetic Alliance hosted salons discussing the public health approach to early disease detection and intervention. The purpose was to have a conversation around what to consider when identifying genetic disorders within a public health framework. A collaborative effort is needed to develop a public health approach to use clinical, genetic, and family history information effectively for early diagnosis of disease leading to improved health outcomes. Genetic Alliance, in partnership with the Office of Public Health Genomics, CDC, and other partners are part of such an effort, titled Genetics for Early Disease Detection and Intervention to Improve Health Outcomes (GEDDI). The initial focus of this initiative will be on single-gene disorders but will be expanded in the future to include common diseases as genomics knowledge matures over the next few years.
Read the summary of the salon.
In 2009, Genetic Alliance hosted salons about health, the way we view it, and the impact we seek to make in transforming health systems. Traditionally, work in the biomedical realm has been siloed by field, industry, or agenda. In this information age, with the tools of social networking and a need to accelerate basic science's translation to treatments and services, we have the opportunity to visualize, strategize, disrupt, and take effective steps toward a collaborative system. In these meetings, open-minded and curious individuals came together, leaving certitude and intellectual property at the door, to explore health and its meaning in open space and unfettered thought. What emerged from these salons was the need for an “emergency meeting” on access to healthcare.
In June 17, 2009, individuals in the health community came together for an urgent meeting on healthcare reform. This meeting convened as an open partnership between health organizations in response to the growing dialogue on health reform. We came together in urgency and openness to articulate our shared principles that focus reform on what truly matters: improved health for individuals, families, and communities. Individuals participated in the event by attending the meeting in Washington, DC, and by sharing ideas, energy, and suggestions through an online blog and twitter.
Read and comment on our Advocacy Salon Blog to continue the conversations from recent salons.
Genetic Alliance improves health through the authentic engagement of communities and individuals. In this, our 25th year, we celebrate innovation on our journey toward novel partnerships, connected consumers and smart services.