"A lot of our patients participate in research -- that's one of the unique opportunities that comes with receiving care at an academic medical center. Jodi Tate, who leads our department's clinical operations, had a really brilliant idea to try and bridge the gap between research and clinical care: what if our providers could make use of research results in informing clinical care? Usually it's a one-way street, and researchers are able to access their participants' medical records, but rarely do clinicians have access to findings that come from their patients' participation in research. The hope is that the additional insight provided by research results will inform and improve the quality of clinical care.
Of course, in some instances, there are sensitive forms of information produced by research, like genetic findings. Our research protocols prevent us from putting specific genetic findings into the medical record. But where possible, and where the participant gives informed consent, we want everyone in the participant-provider-researcher relationship to benefit from productive and appropriately regulated sharing of information.
So, providers, who may not typically participate in research, will gain additional insight, and patients will hopefully see more of a return on their invested time in research, as it becomes another data point that informs and improves their care."
"Usually research is based around a specific diagnosis: autism, or Tourette syndrome, for instance. But nature doesn't respect our man-made boundaries, and anyone who lives with a neurodevelopmental disorder knows that they don't fit into our neatly defined boxes. There is a lot of overlap between disorders, and we can't understand that overlap if we focus too much on a specific diagnostic label. So, one of the goals of the registry is to standardize or align how individuals are assessed in the clinic, so that the data we have is more uniform across disorders. This removes a lot of barriers to doing cross-disorder research.
Another goal is to increase the translational potential of research findings. A lot of the data we and others collect ends up in publications, but we would like to do more to get that data into the hands of the participants themselves, and to do it in a way that provides context and value. This registry is a first step in that direction."
"First, it gets researchers and clinicians talking to each other, which is always a good thing.
Second, by having a central registry we hope to provide more opportunities for our patients to participate in research. On the other hand, we want to decrease the burden of participating by reducing the number of times a patient has to provide the same information. I am both a researcher and a frequent research participant, and I am very familiar with the frustration of: "didn't I already fill all this out?"
Finally, this registry is important because it raises awareness about the need for the community to play an active role, through participation in research, in building the knowledgebase we need to develop better treatment options."