Trina Geye received her Ph.D. in educational psychology from Texas A&M University-Commerce in 2016. During her Ph.D. training, she used computer mouse tracking to collect data related to automatic processing during numerical cognition tasks. She is an associate professor and assistant head for the Department of Psychological Sciences at Tarleton State University. She currently co-leads the SETBP1 Community Research Study (SCORES) with Haley Oyler, president and founder of the SETBP1 Society. Before becoming a faculty member, Geye worked to support adults with developmental disabilities in community employment, served as executive director of a non-profit child advocacy program, and oversaw services to college students with disabilities. She has served on the SETBP1 Society board of directors since its inception.

We interviewed Dr. Geye about her latest research projects and collaboration with Simons Searchlight.

How did you first start collaborating with Simons Searchlight?

My childhood best friend, Haley Oyler, is the president and founder of the SETBP1 Society but, more importantly, she is mom to my “nephew” Cole. I witnessed the struggle to get a diagnosis for Cole, and then to navigate decisions about treatment. There is no one more invested in advocating for the SETBP1 HD community, but she did not have a voice in the direction of research. As a faculty member, I had the resources to get an IRB approved and to include her as a co-principal investigator, which gave her a seat at the table. My collaboration with Simons Searchlight is the way that I can help my friend in her life’s work.

How have you and your team used information collected from Simons Searchlight families in your projects?

In addition to the data housed with Simons Searchlight, we have also collected data related to parental stress in the SETBP1 HD community, and we conducted a parent needs assessment in collaboration with the SETBP1 Society. We are currently working to publish our work in scholarly journals and to make our findings accessible to the community.

What type of data did your team use, and was it associated with a specific genetic change?

We are specifically interested in the phenotype-related data in the SETBP1 HD community. This type of data refers to information about the physical traits or characteristics of a person, like their appearance, behavior, or any health issues they might have. This data helps scientists and researchers understand how different genes and genetic variations can influence how someone looks, acts, or their overall health.

How has using Simons Searchlight data aided in our understanding of the genetic variants associated with autism and developmental delay?

I think that there is a great opportunity for Simons Searchlight data to help us understand autism and other developmental disorders. The collaborations, especially with the community members, are invaluable.

From a researcher’s perspective, how important is it for families that have rare genetic disorders to become involved in a registry study?

It is critical for families to become involved in a registry study. The rare disorders affecting the children in the communities represented by Simons Searchlight are just that – rare. Simons Searchlight provides a platform from which aggregate data can be reported without losing the individual voices of community members.

What are your future plans for collaborating with Simons Searchlight or using Simons Searchlight data?

We are currently preparing to launch a series of assessments that will complement the data available in Simons Searchlight to work towards a more robust understanding of the SETBP1 phenotype.

What kind of research did you do at the 2022 Family & Research Conference?

We attended the 2022 Family and Research Conference in order to conduct cognitive assessments.

What was the experience like for you? Do you have any specific highlights or stories that you would like to share?

Honestly, our experience at the conference was amazing in terms of meeting the families and visiting with other researchers, but we were not successful in our assessments due to the inability to prepare for specific ages, communication abilities, and language abilities. We now know exactly what kind of information we’d need to have beforehand.

How has this experience affected your research moving forward?

Getting to know the families and their priorities, and interacting with the children was invaluable. The assessments we selected for our ongoing work are in direct response to our observations and conversations in Baltimore.