Experiences of Siblings of Individuals with MPS

            Calling all siblings! Do you have a brother or sister with Mucopolysaccharidosis (MPS)? Do you know someone who has a sibling with an MPS condition? If so, this is for you! Researchers at Massachusetts General Hospital are conducting a study about the experiences of siblings who have brothers or sisters with MPS and are currently looking for siblings to participate.

In this study, siblings will complete a brief electronic survey to gather information about their experiences and perceptions. Siblings ages 8 and older who have a brother or sister with any MPS condition and who are located in the United States are invited to participate. Consent from a parent or legal guardian is required for siblings under the age of 18. The survey has been approved by the Partners Human Research Committee. All participants and responses will be kept anonymous.

For more information about the survey and to participate, please click on the survey link at https://redcap.partners.org/redcap/surveys/?s=4LKX7HMXTJ and provide your feedback no later than Friday, April 26, 2019. The survey should take approximately 15 minutes to complete.

Results may be used to inform and guide family members, health care professionals, and policy makers about ways to recognize, include, and support siblings. If you have any questions about the study, please contact the research assistant, Nathan Grant, at NGRANT6@mgh.harvard.edu, or the Principal Investigator, Dr. Brian Skotko, at bskotko@mgh.harvard.edu.

Thank you for your interests and support for this study!

Survey link: https://redcap.partners.org/redcap/surveys/?s=4LKX7HMXTJ