Quality of Life Survey Pilot Study


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. 


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

What is involved

By agreeing to participate, you will be asked to complete an online survey. The survey will ask you questions about your child’s symptoms related to RCDP, their overall experience with RCDP, and your experience with RCDP. The duration of the survey will be 20 minutes.

If you are interested in participating in this study, please click this link and read through the online prospective agreement form for further details. You will be directed to the survey after selecting “I agree to participate” in the form.

For any additional questions or concerns you may have, please contact Mousumi Bose, 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 the pilot

After the pilot project is complete, we anticipate refining the survey based on the feedback we receive. Ultimately, this survey is intended to be incorporated into the Natural History Study, allowing for longitudinal quality of life measurements in participating patients.