STUDY: Transitioning from Pediatric to Adult Health Care in Lysosomal Diseases: The MPS Experience
Calling All Individuals with MPS and Their Caregivers!
Are you or your loved one with mucopolysaccharidosis (MPS) navigating the transition
from pediatric to adult health care? Or have you already transferred to adult health care? If so,
we want to hear from you!
With advances in health care, people with MPS are fortunately living longer. As people
with MPS age, they may need to transition from pediatric to adult health care. However, very
little is known about the experiences and needs of patients and caregivers during this transition
process. To better support the MPS community, researchers at Boston Children’s Hospital are
conducting a study to identify the experiences of people with MPS and their caregivers during
the transition from pediatric to adult health care. If you have MPS or know someone who does,
please see below for more information!
The purpose of this study is to identify the experiences, perceptions, and support needs of
people with MPS and their caregivers during the process of transitioning from pediatric-centered
to adult-centered health care services in the US. Individuals with any MPS condition and their
caregivers, including parents, siblings, guardians, and others, may participate in this study.
Participants must be at least 18 years old and located in the US. We want to hear from both
participants who have and have not yet transferred to adult care.
In this study, participants will be asked to complete a brief online survey to gather
information about their experiences and perceptions. The survey has been approved by the
Institutional Review Board at Boston Children’s Hospital. The survey collects no identifying
information, and all responses will be kept anonymous and secure. Participation is voluntary and
participants may withdraw during the survey with no consequences. Participants will be emailed
a $20 gift card after completing the survey.
For more information about the study and to participate, please click on the survey link
here: Survey Link.
The survey should take approximately 30 minutes to complete. Please complete the survey by
Monday, January 20, 2025.
By completing the survey, participants will provide information that may raise awareness
and ultimately help guide the development of resources to support the MPS community.
If you have any questions regarding the study, please contact the Principal Investigator,
Dr. Ahmet Uluer, at ahmet.uluer@childrens.harvard.edu. Thank you so much for your interests
and support for this study! We look forward to hearing from you!
Sincerely,
Nathan Grant, MPhil, Research Assistant, Boston Children’s Hospital
Dr. Ahmet Uluer, Principal Investigator, Boston Children’s Hospital
Please click on the survey link below and provide us with your feedback no later than
Monday, January 20, 2025.
