AN EXPLANATION FOR ALL THE WONDERFUL
PWS FAMILIES WHO PARTICIPATED IN MY RESEARCH

FROM
SUZANNE B. CASSIDY, MD

My colleagues and I are extremely grateful to the people with PWS and their families who were kind and adventurous enough to participate in our research project at Case Western Reserve University (1998-1999) or University of California, Irvine (2000-2003), which was sponsored by the March of Dimes. Your commitment to learning more about PWS and the dedication of your time and effort is truly commendable. Thanks to you, we were able to evaluate a total of about 65 individuals during 2 ½ day stays in the Clinical Research Center.

You may have remarked that the results of this research have not as yet been published. An explanation is in order. During the 2002-2003 academic year, when the data should have been analyzed, the Clinical Research Center dismissed the data analysts who had been working with our results. At the same time, the project’s research coordinator and her student assistant and the psychologist who was to analyze the neuropsychological data all left the university for positions elsewhere. Since our funding had been spent, we were not able to re-fill these positions. There was, therefore, no one available to perform the statistical analysis needed for medical journals to accept manuscripts. Although there were presentations made based on the data, (see below) there have not been publications.

The data is still intact and available, as the Human Subjects Committee at University of California, Irvine has continued to give approval to my applications to continue the project for the data analysis component. We have lately been in communication with biostatisticians in two different institutions who have expressed interest in donating their time to help analyze the data. We still expect to make important observations based on the data. We hope that you are able to continue to be patient—we are still working on it!

Presentations:
Cassidy SB. Simpson E, Heeger S. How much of the Phenotype of Prader-Willi Syndrome is due to Growth Hormone Deficiency? Platform presentation, David W. Smith Workshop on Morphogenesis and Malformations, Vancouver, B.C., August 2003.

S.B. Cassidy, E.L.Simpson, S.I. Heeger. Facial Phenotype becomes More Normal with Early Growth Hormone Treatment. Platform presentation, Prader-Willi Syndrome Association annual scientific conference, June 30, 2004, Sandusky, OH.