Longitudinal Quality of Life Survey Pilot

Dear parents, we are inviting you to participate in an online study to develop a quality-of-life survey instrument for RCDP that may be used in clinical trials. Measures of quality of life have become a vital part of health research, including providing meaningful information about how beneficial various treatment options are and determining the efficacy of potential therapies. While a wide-range of quality of life scales have been previously developed, the unique and diverse clinical symptoms associated with RCDP required the development of a custom scale. 

The purpose of the study is to test for the validity and reliability of the current draft of the quality-of-life survey. This information will be based on your responses to the survey questions about your child’s symptoms and your family’s experience with RCDP.  

Your input in this study will be very beneficial to any future therapies and to all families affected by RCDP.  

ELIGIBILITY 

You are eligible to participate in this study if you are currently the primary caregiver of a patient who has been diagnosed with RCDP. Your participation in this study is completely voluntary.

WHAT IS INVOLVED

By agreeing to participate, you will be asked to complete a series of an online surveys over a period of time. You will first be asked to complete the survey once a day for 3 consecutive days during the first month of the study, once during the second month, and once during the third month. The survey will take approximately 10 minutes to complete each time.

If you are interested in participating in this study, please click this link and complete the online form.

Deadline for enrollment is 5pm EST on October 23rd, 2020.

For any additional questions or concerns you may have, please contact Mousumi Bose, Assistant Professor in the Department of Nutrition and Food Studies at Montclair State University and Principal Investigator of this study, at bosem@montclair.edu or call 973-655-3358. 

This study has been approved by the Montclair State University Institutional Review Board, Study #FY17-18-1045. 

AFTER THIS STUDY

After this study is complete, we anticipate that this survey will be incorporated into the Natural History Study, allowing for longitudinal quality of life measurements for participating patients.