Decision Support for Parents Receiving Genetic Information about Child’s Rare Disease (DSP)
Funding agency: Patient-Centered Outcomes Research Institute (PCORI)
Main award to University of Michigan (Principal Investigator: David Sandberg, Ph.D.)
Total funding period: March 2013 – February 2016

This project seeks to develop a decision aid, used by parents together with health care providers, to help educate parents on sex development, diagnosis process, treatment options, and possible outcomes of genetic testing. For this, parents of newly diagnosed children with disorders of sexual development (DSD) consented to audio recording of their child’s routine medical appointments. Temple University is involved in assessing the usual care provided in these situations through qualitative analysis using the Siminoff Communication Content and Affect Program (SCCAP). SCCAP is a computer program specifically designed for the purpose of coding and analyzing conversational data, and considers not only the content of the conversation, but also relational, nonverbal, and persuasive communication. The results from SCCAP will then be used to compare how the introduction of the decision aid affected communication between parents and health care providers.

Disorders of Sexual Development are congenital conditions in which development of chromosomal, gonadal, or anatomic sex is atypical. The birth of a child with a DSD raises multiple questions about the etiology and course of treatment. Decisions regarding genetic testing, gender, assignment, and genital surgery are often made quickly and under pressure, and often are irreversible.

Research Team Contact:
Kristin Kopec
kristin.kopec@temple.edu
215-204-4284

Research Partners:
University of Michigan
University of California, Los Angeles
Seattle Children’s Hospital

http://www.chear.org/hrqol-clinical-research-tool

“Health research is now a team science, and we’ve come to understand how people maintain their health is complicated. It is a process between behavior, environment, genes, culture, and other factors, and we are training teams to come up with answers to some of our most complicated and pressing questions, issues, and concerns.”

- Laura A. Siminoff, Ph.D.

Today, we are an integrated college both in terms of education and research, across this spectrum of disciplines, which is not the traditional way that public health higher education institutions typically function. But if we consider where we are moving as a nation and as a field, I think this is the way to move forward and puts CPH ahead of the curve.

- Laura A. Siminoff, Ph.D.

Thank you to our CEaD Participants

Thank you to all who participated in the Communicating Effectively about Donation Study! We hope the training program was both informative and beneficial to all who took part. For inquiries regarding the study or how to access the training, please feel free to contact us at ceadtraining@temple.edu.

Congrats Grads!

Congratulations to our graduating Research Assistants, Sonali Shah, Julianna Nass, and Faith Scanlon! We know you have great things in store for you!

Dr. Siminoff’s Newest Publication

Dr. Siminoff and colleagues recently published an assessment of the utility and usability of the rapid assessment of hospital procurement barriers in donation (RAPiD) as a tool for OPO hospital development staff. Click here to learn more about Dr. Siminoff’s most recent publication.