RESEARCH STUDIES LOOKING FOR PARTICIPANTS

STUDY 1: Enhanced CARE for RARE Genetic Diseases in Canada

DO YOU HAVE A CHILD WITH A RARE GENETIC DISEASE OR SUSPECTED GENETIC CONDITION?
ARE YOU INTERESTED IN PARTICIPATING IN A RESEARCH STUDY?

Researchers at the University of Calgary are conducting a survey with Canadian families to examine the impact of a diagnosis for families of children with rare genetic diseases or suspected genetic conditions. This should take about 20 minutes to complete.

This survey is part of the Enhanced CARE for RARE Diseases Research Study. The University of Calgary Conjoint Health Research Ethics Board has reviewed and approved this research project. Read More


STUDY 2Quality of Life Survey for Individuals with Marfan Syndrome

Ileana Ratiu, Ph.D., CCC-SLP, and her research team members are conducting a research study on the quality of life in individuals with Marfan syndrome. This research study has been reviewed and approved by the Midwestern University Internal Review Board.

You can participate by completing this survey, which should take no longer than 20 minutes. This survey asks you about various aspects of your daily life and will help us determine what challenges individuals with Marfan syndrome might experience in their daily lives. Read more