Clarification

When families first contact the Registry or the Clinical Research Center, they may be confused about the relationship between the two. I know that this topic is discussed in various places on the respective websites of the two organizations, and that it is also frequently discussed at the Annual Conference. Still, as I was writing yesterday's post, I realized that I was talking about both the Registry and the Research Center, almost interchangeably! So, I thought this might be another good opportunity to give the a basic run-down on the two organizations.

The Chromosome 18 Registry & Research Society

The Registry is the advocacy organization. It was started by families of people with chromosome 18 changes, and it continues to be run by these families. The Registry hosts the Annual Conference. The regional groups host family gatherings and events. The Registry also raises funds for research. Families hold individual fund-raisers, while the Registry office organizes events such as the Phantom Tea and the Golf Tournament. The Registry also runs the listservs for the various conditions involving chromosome 18.

The Chromosome 18 Clinical Research Center

The Research Center is the scientific organization. The people who work at the Research Center come from a variety of professions. We have nurses, physicians, psychologists, and lab technicians. The research team is dedicated to learning more about chromosome 18 changes. We want to learn about how these changes affect people's health and development. We also want to learn about the changes at the molecular level. Our ultimate goal is to learn about the relationship between the precise molecular change and the medical and developmental concerns in people who have these chromosome changes.

Now, although the Registry and the Research Center are two separate organizations, they are very interconnected. The funds that the Registry raises support the work at the Research Center. Many families that are part of the Registry also participate in the studies at the Research Center. Also, a few of us work with both organizations. For example, most know that Dr. Jannine Cody is the director of the Research Center, but also that she is the president of the Registry. As for me, I work mostly with the Research Center, but I also coordinate the Registry's Facebook page as well as this blog.

For families, I think the most important thing to understand about this arrangement is that membership in the Registry does not mean that a family is automatically enrolled at the Research Center, and vice versa. Of course, the degree to which each family participates in the two organizations is completely up to them!

Hopefully, this might help clear up any confusion that might be out there about the two organizations!