Rehabillitation following Selective Rhizotomy in New Zealand
Who is eligible?
This study is looking to recruit NZ children aged 2-18 who have had SDR. We will be recruiting between now and 2nd August 2022. To be eligible for the study, children will have cerebral palsy and have travelled to Australia or overseas to have had their SDR procedure. Families can contact Dr Nichola Wilson directly email@example.com or Health Professionals working with eligible families can provide them with study information.
What is the study about?
SDR may be an important treatment option for children who have cerebral palsy and has generated much interest for individuals and their families. There has not been much research done about this topic in our country and we want to get a much better understanding of it.
NZ children have been accessing the SDR procedure for a number of years to improve the spasticity associated with their cerebral palsy. We know very little about who they are, and the number, type and frequency of rehabilitation services they have required to support the success of their SDR procedure.
We would like to document the healthcare of children in New Zealand that have had SDR, with the long-term aim to improve access for all families to a co-ordinated and effective set of rehabilitation therapies following SDR.
What does the research involve?
For children and families:
There is no time required from you or your child aside from reviewing the participant information sheet and signing the consent form. You have already done your part, and all the information we need to do this research is already recorded in the medical notes of your child. If you agree to your child’s participation in this study no specific follow up will be involved.
The way that we will gather information for this study is to conduct what is known as a ‘retrospective case note review’. A researcher will review your child’s medical records to collect information. With your permission, the researcher may also need to contact any private rehabilitation providers your child has engaged with to ask for information about the services they provided for your child. Please list these providers on the attached consent form.
The information extracted from the case note review will include details about: demographics, past medical history, previous interventions, the SDR procedure (e.g. date and location, other surgery, rehabilitation protocol), radiological investigations and service delivery (e.g. type and number of hospital visits and therapy appointments before and after SDR).
The study will run for 2 years and during that time we will recruit participants, conduct case note reviews, and systematically record and summarise the findings.
For health professionals:
Please help raise awareness of our study by mentioning it to any families involved in your care who fit the eligibility criteria and giving them a copy of the study advertisement or participant information sheet so they can get in touch with our team.
If you think you would like to be involved in this study, please find more detailed information below:
Nichola Wilson - Lead Investigator
Email: firstname.lastname@example.org or phone 021 144 1162