OPEN CLINICAL RESEARCH STUDIES
Connecticut Children's Medical Center
We are doing this study to see how children and teenagers with Sickle Cell Disease-related pain are able to function (walk around, perform self-care activites) while they are in the hospital. If you and your child wish to participate in this study while at the hospital he or she will be asked some questions dealing with function. We can only accept children in this study who are 7 years old or older and admitted to CCMC with sickle cell realted pain. The Prinicpal Investigator for this study is Dr. William Zempsky and James Santanelli is the Study Coordintor. If you have any questions about this study or interested in hearing more please feel free to call 860-545-9021 for more information.
Also please take a moment to review our brochure that describes this study in a little more detail.
2) Validation of the Sickle Cell Pain Burden Interview (SCPBI)
The purpose of this study is to validate a brief survey tool, the Sickle Cell Pain Burden Interview (SCPBI), which can be used in the clinical and/or research settings to assess the impact of pain on children with sickle cell disease. The daily impact of pain on children with sickle cell disease is not well understood. In addition there are currently no valid instruments that stratify children with sickle cell disease in regards to pain severity or impact. This tool could also be used to track the efficacy of interventions over time.
Patient and family are approached in the outpatient Hematology clinic or on the inpatient floor. The parent and child will complete a demographic information and general medical history form as well as several other questionnaires that deal with pain and emotions. Patients will be followed up a few times over the next year with brief check-up phone calls to monitor how you/your child are dealing with pain.
If the SCPBI can be validated in this study, it can be utilized in the clinical setting. Doctors and healthcare providers can use this new tool to assess a patient’s pain burden over the month prior to the clinic visit. The provider can track pain burden over time and use it as a way to track pain management over time.
The Prinicpal Investigator for this study is Dr. William Zempsky and James Santanelli is the Study Coordintor. If you have any questions about this study or interested in hearing more please feel free to call 860-545-9021 for more information.
3) Functional Magnetic Resonance Imaging (fMRI) in Patients with Sickle Cell Disease and Healthy Controls
Dr.'s Zempsky and Hagstrom of Connecticut Children's Medical Center and Dr. Stevens from Hartford Hospital are conudcting a research study using functional MRI to understand how pain is processed in the brains of patients with sickle cell disease. Currently, we are enrolling male/female African-Americans between the ages of 15 to 30 who have Sickle Cell Disease as well as healthy male/female African-Americans between the ages of 15 to 30. This study takes approximately 3 hours to complete and particpants will be compensated for their time. If you are interested in particpating in this study please contact the study coordinator, James Santanelli at 860-545-9021.
For more information on this study please take a moment to review our brochure.
