50 women are needed to fill out a questionnaire about the effects of myotonia congenita and paramyotonia congenita on pregnancy and delivery — and vice versa
|Upate (Dec. 18, 2013): This study of pregnancy and delivery in women with myotonias is no longer recruiting new participants. The investigators will continue to collect data forms from people with whom they are already in contact.|
Investigators at the University of Rochester (N.Y.) are seeking participants for a questionnaire-based study of pregnancy and delivery in women with nondystrophic myotonias. No travel is required.
Nondystrophic myotonias included in this study are:
Emma Ciafaloni, an associate professor of neurology at the University of Rochester Medical Center, where she co-directs the MDA clinic, is the principal investigator.
She's collaborating with Eva Pressman, professor and director of Maternal-Fetal Medicine at the University of Rochester, and Yuliya Snyder, who is doing postgraduate work in neuromuscular disease at that institution.
The investigators hope to:
The study will include women who have been pregnant as well as those who have not been pregnant. Investigators say they're interested not only in pregnancy and delivery outcomes but also in reasons why a woman with a nondystrophic myotonia may choose not to become pregnant.
There is no cost to participate in this study, and postage-paid envelopes will be provided to make it easier to return the forms.
Prospective participants must:
For more information or to participate in this study, contact Colleen Donlin-Smith, study coordinator, at (585) 275-7680 or at Colleen.Donlin-Smith@rochester.edu. Alternately, you can page Yuliya Snyder, study co-investigator, by calling (585) 220-4639 and entering a call-back number.
For more informationTo learn more about pregnancy and neuromuscular disease, read these Quest articles: