Research Awards
Debra Weese-Mayer, M.D.
Rush Children's Hospital at Rush-Presbyterian-St Luke's Medical Center
"Breathing Disorder in Rett Syndrome and the Malregulation of Autonomic Function"
2-Year Award: $100,000
Research Sponsor: Gardner Family Foundation
Lay Progress Report (August, 2003)
With the generous allocation of research funding the proposed research project is continuing to evolve and grow. Many changes have been initiated since the project inception. First, we are expanding the age range from ages 2-5 years, now to 2-6 years. Second, we are transitioning to a totally inclusive vest technology to simplify the task of recording. This is a remarkable improvement over the 13+ pound monitor on the luggage cart! We are in the final stages of verifying that the ASCII file output from the LifeShirt vest can be fully interpreted for non-linear analysis. As soon as that is completed we will be ready to zip the girls into the vests and simplify the recording experience for their families. Third, we have modified the duration of time for monitoring to include 2 hours awake, for 2 consecutive days, watching a specific video that we will include as a gift with the equipment shipment. We are still requesting two complete nights of recording. This revision in the protocol now has the Rush Institutional Review Board approval. This modification will be more realistic for parents who are already juggling too many responsibilities and who are graciously participating in our research project.
Please remember that for enrollment in our study, we need a copy of the laboratory report indicating the genetic testing results for one of the known Rett mutations. After a family signs the IRB approved consent and the HIPAA consent, we will send them a request for medical records. We will also arrange for a mutually agreeable time to use the recording equipment. When the equipment is shipped we will include clear understandable directions for its use, an activity log to complete during monitoring the child, and the educational video. In addition to assistance from our new Project Coordinator, Ms. Christina Boothby, there is a 24 hour help line for the LifeShirt vest technology company. Parents should never feel alone when they are participating in our research study!
We are continuing to look at the waveforms and scoring by the traditional method, and by the non-linear analysis. As the sample size grows we anticipate preparing a preliminary report for RSRF. At this point, the data sample is too small to confidently report our findings.
Debra Weese-Mayer, M.D.Rush Children's Hospital at Rush-Presbyterian-St Luke's Medical Center
"Breathing Disorder in Rett Syndrome and the Malregulation of Autonomic Function"
2-Year Award: $100,000
Research Sponsor: Gardner Family Foundation
Lay Progress Report (August, 2003)
With the generous allocation of research funding the proposed research project is continuing to evolve and grow. Many changes have been initiated since the project inception. First, we are expanding the age range from ages 2-5 years, now to 2-6 years. Second, we are transitioning to a totally inclusive vest technology to simplify the task of recording. This is a remarkable improvement over the 13+ pound monitor on the luggage cart! We are in the final stages of verifying that the ASCII file output from the LifeShirt vest can be fully interpreted for non-linear analysis. As soon as that is completed we will be ready to zip the girls into the vests and simplify the recording experience for their families. Third, we have modified the duration of time for monitoring to include 2 hours awake, for 2 consecutive days, watching a specific video that we will include as a gift with the equipment shipment. We are still requesting two complete nights of recording. This revision in the protocol now has the Rush Institutional Review Board approval. This modification will be more realistic for parents who are already juggling too many responsibilities and who are graciously participating in our research project.
Please remember that for enrollment in our study, we need a copy of the laboratory report indicating the genetic testing results for one of the known Rett mutations. After a family signs the IRB approved consent and the HIPAA consent, we will send them a request for medical records. We will also arrange for a mutually agreeable time to use the recording equipment. When the equipment is shipped we will include clear understandable directions for its use, an activity log to complete during monitoring the child, and the educational video. In addition to assistance from our new Project Coordinator, Ms. Christina Boothby, there is a 24 hour help line for the LifeShirt vest technology company. Parents should never feel alone when they are participating in our research study!
We are continuing to look at the waveforms and scoring by the traditional method, and by the non-linear analysis. As the sample size grows we anticipate preparing a preliminary report for RSRF. At this point, the data sample is too small to confidently report our findings.