PWS Blog

Exciting New Prader-Willi Syndrome Research at The Children's Institute

Posted: Jun 26, 2014 by The Children's Institute

This month, we sat down with Dr. Roxann Diez Gross, PhD, CCC-SLP, Director of Research at The Children’s Institute, and Ronit Gisser, M. Sc., CCC-SLP, Research Administrative Assistant, to get the scoop on their most recent PWS research project. They are finalizing results of a study that has the potential to improve the clinical treatment of patients with Prader-Willi syndrome.

What was the focus of the study?

The study looked at swallowing and respiration of patients as they ate and drank. That’s important because, too often, patients with PWS choke and aspirate. This is the first time that swallowing function has been investigated in the PWS population.

It’s always been assumed that the patients simply ate and drank too much, too fast—but the new research shows that is not the case. The results, which have the potential not only to improve clinical approaches but also to save lives, will be submitted to a professional journal for publication.

How did the study come about?

When Dr. Gross originally started working full-time at The Children’s Institute, individuals with Prader-Willi syndrome would typically undergo diet alterations in order to prevent choking episodes. Because these episodes can have dire consequences, Dr. Gross, with the help of Dr. Gregory Cherpes and Ms. Gisser, turned to medical literature, and articles that focused on PWS and its relation to choking deaths and lung infections. They found nothing on swallowing function. They hypothesized that individuals with PWS had an underlying swallowing problem.

When did the study begin?

The study began in April of 2013, and it took one year to recruit and enroll 30 subjects with PWS to complete the research procedures. Analysis of the data is projected to take another two months before the findings will be presented to the international medical community on this group that has subclinical (undetected) dysphagia.

Who participated in this study?

The research department received calls from eager volunteers - from all over the country - interested in participating in the study. In fact, one family drove ten hours each way in order to participate.

Was the study a success?

According to Dr. Gross and Ms. Gisser, their hypothesis has certainly been proven, and the study results will soon be submitted to a professional journal for publication. “Overall, through this research, we have been able to become more experienced than any other institution in evaluating swallowing function in persons with Prader-Willi syndrome,” said Dr. Gross.

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