Current Research at SSCY Centre

Play is an important activity for children. Almost all children play, but what is play? It is not easy to define play. In the past, people believed that children played to burn their energy. Now, we know that play is important for children’s growth and development. Some children with disabilities may experience barriers to play. We have some theoretical models of play. But they are not complete. They do not look at play as a whole. Some models are just about playfulness, and some are about playing with others. Play is a child’s right, and ALL children should be able to play. This project aims to define play and identify features that are important in helping a child with a physical disability fully engage in play. Having a model that defines play helps us think about play and the different aspects of play. Then, when a child cannot play, we can find the part that is not working and fix it. We want to introduce a model of play in this project. We want to edit and complete it in three steps. So, as the first step in this project, we will ask parents and children with physical disabilities about things that help or do not help them play! Please see the attached poster!

Lay Summary
Social connectedness, which refers to a sense of belonging to an individual or group, is a central human need. It is a known protective factor for mental health and well-being, and prevents youth from doing risky things, which has lasting effects into adulthood. The COVID-19 pandemic has made it tough for kids to feel connected, and we think it might affect them for a long time.

We want to gather information to create a toolkit that supports social connectedness and we want to include the perspectives of children with disability in this toolkit. This toolkit will help kids in Grades 6, 7, and 8 feel more connected enhance their mental health and well-being. We will ask kids to join in and share their thoughts through three interviews and other art-based activities. The toolkit will be made with the help of kids, and we will try it out during the study to see if it helps. Participants will have the option to take part in virtual or in-person interviews and they will receive a gift card for each interview they participate in.
Please contact ingauge@umanitoba.ca for more information.

SSCY CM FEB 2024

Autism is a neurodevelopmental condition that one in 50 Canadian children experience. Autistic people have a range of abilities and challenges that differ from person to person and also within an individual over their lifetime. The lack of a clear prognosis often makes it difficult for families and specialists providing care for autistic people.

The Pediatric Autism Research Cohort (PARC) study will be one of the world’s largest studies aimed at finding out the care needs of children with autism. PARC will include 1,000 children across all its sites. These include its four existing locations in Hamilton, Ottawa, Kingston, and Sudbury, as well as new participants from autism clinics in Winnipeg, Edmonton and Victoria.

This study will collect data every six months through PARC’s online platform, from the time of diagnosis to children’s early school years. Caregivers will answer surveys gathering information on the child, family background, services they receive and their environment. Families will also receive a report describing their child’s developmental progress. By tracking children’s progress, the PARC Study also aims to gather evidence on what to expect as children with autism develop. This will help clinicians and families to better co-ordinate their efforts when planning care.

0123-PARC-flyer-Manitoba SM

This study is looking for parents of children with autism spectrum disorder (ASD), attention-deficit/hyperactivity disorder (ADHD), and co-occurring ASD and ADHD (ASD+ADHD) – as well as families with typically developing children. Participants must be parents (or other caregivers) with at least one child between the ages of 2 and 18 years, who reside in Canada or the United States. Using an online survey, we want to know about your experience as a parent, including factors that may affect parenting stress and family quality of life, as well as your child’s development. This survey will take about 30-45 minutes to complete. By taking part in this study, your contribution will help to improve the lives of families and allow clinicians to more effectively provide parent-child support.

Please email Dr. Jen Theule if you would like to learn more at jen.theule@umanitoba.ca or call 204-474-7417

The aim of this study is to understand the experiences of older children who are new Power Mobility Device (PMD) users. The study purposes are to: describe individual sense of well-being as reported by children who receive their first PMD, determine changes in home and school participation aided by use of a PMD, explore caregiver and educational support persons perspectives on the introduction of the PMD on the child’s home and school participation. We will follow participants over a 6-month period. We will include; one child (age 7-21) who is receiving their first PMD from RCC and who is currently a manual wheelchair user, one or more family members, interviewed together as a family unit and one teacher or educational assistant. Semi-structured interviews will be conducted with the parent and child at three points in time in person. One semi-structured interview with the teacher or educational assistant will be conducted virtually using the Microsoft Teams platform at one point in time. All questions are customized for each respondent related to mobility, independence, behaviour, peer engagement, participation, self-confidence. At the conclusion of this study, we expect outcomes at the child/family and service delivery levels. We will gain a better understanding of the importance of independent mobility in the lives of older children who had previously been dependent for mobility. Findings will also contribute to improved service delivery by better understanding of the goals, impact, and opportunities to increase participation and well-being through appropriate PMD prescriptions leading to more children with increased independent mobility opportunities.

For more information, please contact Dr. Elizabeth Hammond at ehammond@rccinc.ca

The threat of the COVID-19 pandemic has increased the challenges experienced by families of children with disabilities as well as widened the gaps in our healthcare system for those who are disabled.  The pandemic has changed how children with disabilities receive care including a greater focus on the use of virtual care. We are conducting a research study to understand how the changing care practices during COVID-19 has affected families of children with disabilities and to hear from families what care should look like for their child going forward and for future health crises. We will develop a model of care based on the recommendations of families of children with disabilities as well as service providers of the ways to improve services and supports for families for care in current times and future health crises.

We would like to hear from families about their preferred healthcare and social service needs, as well as their recommendations of the ways to improve services and supports for children with disabilities. Families will be invited to take part in individual, family and focus group interviews. Service providers will also be asked to share their views on ways to improve services and supports for families of children with disabilities. Families and service providers have the option to take part in virtual or in-person interviews.

If you would like more information on this project please contact ingauge@umanitoba.ca 

Physical activity is an important aspect of healthy childhood development. By participating in leisure activities, such as riding a bicycle, children can improve cardiovascular fitness, strength, and bone density.  In addition, engagement in leisure activities provide a child with the opportunity to interact with their community environment, learn social skills, and establish meaningful relationships with family members and peers. For many children, learning to ride a bicycle provides a gateway to lifelong recreation. Children living with cerebral palsy or other neuromuscular conditions may have difficulty performing the purposeful movements required to ride a traditional bicycle due to weakness, spasticity, contractures, or decreased balance. Pyschological barriers to biking might include low levels of self-efficacy and perceived physical competence. The aim of this study is to develop an adaptive bike assessment procedure designed to track improvements in the physical performance of riders. The findings of this study will be used to develop evidence informed set of assessment tools and protocols for evaluating the impact of adaptive cycling on the physical and psychosocial function of children with neuromuscular conditions.

For more information please contact: Dr. Jacquie Ripat at jacquie.ripat@umanitoba.ca

Cerebral Palsy (CP) is the most common cause of childhood physical disability. Early CP diagnosis and intervention are crucial to improving outcomes in these patients. Constraint-induced movement therapy (CIMT) has become a standard therapeutic intervention for children with unilateral CP. CIMT utilizes restraining of the unaffected upper limb to stimulate the use of the paretic upper limb enhancing neuroplasticity in the affected cerebral hemisphere. Transcranial magnetic stimulation (TMS) is a safe non-invasive technique that stimulates the brain using repetitive magnetic pulses to enhance neuroplasticity. TMS has been shown to improve symptoms of children with neurodevelopmental disorders such as CP. It is predicted that a combined therapy that uses CIMT and TMS is could improve mobility in children with unilateral CP. To determine if combined therapy is beneficial to children with CP and if use of this therapy is feasible for families, we would like to conduct a feasibility trial. In this trial we will enroll 10 children who have unilateral CP, they will either receive:

1. CIMT and TMS or;
2. CIMT and fake TMS, fake TMS consist of a child sitting near the TMS machine but not receiving any TMS.

The aim of this project is to determine if it is feasible to conduct a large randomized control trial to compare the effects of combined CIMT and TMS versus CIMT and fake TMS. We also hope that by conducting this trial we can identify any benefits that the addition of TMS may have in children with CP.

People are interested in using Living Labs to improve research and healthcare services. Living labs help researchers and clients to share knowledge in new and creative ways. The goal of this project is to design a Living Lab at SSCY center. To come up with a Living Lab design, we will work with youth age 5-19 who are being seen by SSCY clinicians, their families, and healthcare providers. This will help us make sure that our Living Lab is engaging and informative for everyone who comes to SSCY.

The project will have three stages. In Stage 1 we will talk to youth who are clients, their siblings, and parents. In this talk, we will ask where they think the Living Labs should be located, what purpose they will serve, and how they should be designed. In Stage 2 we will have youth, siblings, and parents complete a 5-10 minute online survey.

We will use the responses to these surveys to create three examples of a Living Lab. Then we will host a public event where people can see and interact with the Living Lab. The Living Lab will continue to be developed with future funding.

We are currently recruiting participants to take part in the survey. If your family receives services from SSCY clinicians, we would love for you to complete this survey!

If you are interested in finding out more about this opportunity, please contact the Project Coordinator, Sandra Wiebe, and she will send you a link to participate: Sandra.Wiebe@umanitoba.ca

Principal Researcher: Dr. Mandy M. Archibald
College of Nursing, University of Manitoba
204-474-6660
Email address Mandy.Archibald@umanitoba.ca

Lay summary for website

A manual wheelchair can be hard to push long distances and up hills, creating shoulder problems. A power wheelchair requires much less effort, but it is larger and very heavy, making it difficult to use in small spaces and transport in a vehicle. A power assist device (PAD) is a small electric motor that can slide on and off a manual wheelchair. When the PAD is on, the motor turns a drive wheel that pushes the wheelchair forwards making it much easier to propel. When the PAD is off, the wheelchair can be used just as it normally is. The purpose of this study is to explore what children, their parents, and their therapists think about using a PAD on their manual wheelchair. We are interested in learning what they like or don’t like about the PAD; what it is like learning to use a PAD; and the kinds of activities a PAD might be helpful with. This information could be helpful to children and their families when they are considering what kind of mobility device best suits their needs, and to therapists who recommend mobility devices and provide training in how to use them for children. The study involves 2 to 3 sessions where a therapist will introduce the PAD to the child and provide some training on how to use it; the researchers will then conduct an interview with the child, the parent, and the therapist to ask them each about their experience.

Craniosynostosis is a congenital condition affecting 1 in 2100-2500 births and is defined as the premature fusion skull. Craniosynostosis is most often treated with surgical intervention between 6-12 months of age to unlock and reshape the skull to avoid neurological impairment including increased intracranial pressure and neurodevelopmental delay. Current practice in Manitoba is to refer all children who undergo surgery for craniosynostosis to developmental pediatricians for neurodevelopmental evaluation. Recent studies have described very good development outcomes for children following craniosynostosis surgery, with the majority of children being within the normal range for neurodevelopment. Considering the suspected good functional outcomes of these patients and the limited resources available for child development assessment, we propose a descriptive study of the developmental outcomes of preschool children requiring craniosynostosis surgery in Manitoba. In a historical chart review, the developmental outcomes of all patients who have been assessed at the Child Development Clinic at SSCY (Specialized Services for Children and Youth) after craniosynostosis surgery between July 1st, 2016 and December 1st, 2021 (estimated n=140) will be described. The frequency of moderate and severe developmental delay and referral to Children Disability Services will be reported. The results of this study will help inform an appropriate follow up strategy for children undergoing surgery for craniosynostosis in Manitoba.

The SPACE program is an 8-week online parenting program. We are recruiting parents who have 3-4-year-old kids are are expecting increased parenting stress during the pandemic. Our goal is to learn about the benefits of emotion focused parenting strategies and to promote family wellbeing. Those who join our program will be put into one of the three possible groups: (1) The 8-week SPACE program includes videos and parent-child activities which teach parents to reduce stress; (2) The 8-week SPACE program plus weekly online drop-in-groups; (3) A list of community family support services. Families that participate will be asked to complete an online assessment before and after participating and can earn up to $100.

We are conducting a research study to address the behavior of elopement among children with autism spectrum disorder. Elopement occurs when an individual who requires some level of supervision to be safe, leaves the supervised and safe area that they are in and is exposed to potential dangers. This includes bolting away when nobody is looking, wandering off when their supervisor is distracted, or purposely avoiding being seen to leave the supervised area. Elopement can be stressful for families and this behavior can negatively affect their everyday life. We are recruiting caregivers of children between the ages of 2 and 12 years old who have been diagnosed with autism spectrum disorder and who have eloped before to participate in our study. Our participants will complete an anonymous, online questionnaire about their experience with elopement. The purpose of this project is to determine the impact that elopement has on families, what families currently do to help with the behavior, and whether or not families are getting the support that they need. If we determine that this behavior is negatively affecting families’ lives and that support is low, we can then take the next step to determine how we can better support families in need.

For more information, please contact Jenna Heschuk at heschukj@myumanitoba.ca

Adapted bicycles provide opportunities for many children with different abilities to ride a bicycle, in ways that may not be possible with traditional bike. These opportunities allow children to develop many physical skills and abilities, and also offer opportunities to make friends, feel good about themselves, have fun and participate in their community. All of these opportunities are important for increasing children’s health and wellbeing. The goal of this study is to understand the experiences of children who use adapted bicycles and the influence adapted cycling has on their social connections and quality of life. The findings from this study will be used to help improve future programs and services that support children’s opportunities to ride a bicycle.

For more information contact: Dr. Jacquie Ripat 204-789-3303 jacquie.ripat@umanitoba.ca

Some families require respite care for their children. Respite care can help keep parents from becoming very tired or stressed out. Respite care can also help children to socialize with others and feel more independent. However, families are not always able to receive the respite care that they need or can afford.

We are conducting a research study to find ways to improve respite care for families of children requiring respite in Manitoba. We would like to talk to the families that require respite care and hear about their experiences and ideas of ways that it can be improved. Families will take part in two interviews. We will also ask families to take photos of the people, places or things they represent their daily life as well as their experience with respite care and how respite care or the lack of it, impacts their lives. Cameras will be provided to those who need one. We will also interview service providers and other stakeholders to find out what they think about respite care and how respite services can be improved. Families, service providers, and other stakeholders will help define the issues, identify the priorities, and contribute to solutions specific to respite care for children. We will also look at models of respite care that are used across the world to learn more about what has worked well in other places. We will also analyze population-based data about children from Manitoba. The information from these sources will be combined to create a new model of respite care services. This model will be better able to meet Manitoba’s families’ needs.

Craniosynostosis is a congenital condition affecting 1 in 2100-2500 births and is defined as the premature fusion skull. Craniosynostosis is most often treated with surgical intervention between 6-12 months of age to unlock and reshape the skull to avoid neurological impairment including increased intracranial pressure and neurodevelopmental delay. Current practice in Manitoba is to refer all children who undergo surgery for craniosynostosis to developmental pediatricians for neurodevelopmental evaluation. Recent studies have described very good development outcomes for children following craniosynostosis surgery, with the majority of children being within the normal range for neurodevelopment. Considering the suspected good functional outcomes of these patients and the limited resources available for child development assessment, we propose a descriptive study of the developmental outcomes of preschool children requiring craniosynostosis surgery in Manitoba. In a historical chart review, the developmental outcomes of all patients who have been assessed at the Child Development Clinic at SSCY (Specialized Services for Children and Youth) after craniosynostosis surgery between July 1st, 2016 and December 1st, 2021 (estimated n=140) will be described. The frequency of moderate and severe developmental delay and referral to Children Disability Services will be reported. The results of this study will help inform an appropriate follow up strategy for children undergoing surgery for craniosynostosis in Manitoba.

Many children struggle with “picky eating”. When eating habits become too restrictive and start to impact a child’s growth, development, and functioning in everyday activities, this can be understood as Avoidant Restrictive/Intake Food Disorder. There are many different factors that impact how and why a child struggles with restrictive eating behaviours. Previous research has identified low appetite, low variety (typically related to sensory sensitivities), and fear or anxiety related to eating as three primary subtypes of this disorder. Our study is reviewing the characteristics of clients and families who are seen at SSCY and Health Sciences Centre for help with restricted eating behaviours and how well they fit into these previously identified subtypes. By understanding the characteristics of clients and families who have been seen through psychology at SSCY and the types of services they have received prior to their involvement psychology, we hope to be able to tailor and create treatment services that are patient-centered and individualized to the needs of different clients presenting with different feeding concerns.

Autism Spectrum Disorder (ASD) is a developmental disorder that manifests early in life. Children with ASD experience deficits in social communication as well as restricted, repetitive patterns of behavior, interests, and activities. SSCY Centre is the main referral centre for evaluation/treatment of children with presumed and confirmed ASD in Manitoba and captures over 90% of children <6 years diagnosed with autism spectrum disorder in Manitoba. This project aims to gain an understanding of the families that come to SSCY centre for ASD diagnosis and how we can help with supports, and interventions.

Little is known right now about how children with Autism in Manitoba compare to children with Autism in the rest of Canada. This study will look at all the children diagnosed with Autism at the SSCY centre from March 2016 to March 2021. We will look at demographic information and what other diagnoses our children received, as well as what resources they were referred on to. This will help for future planning and to make sure that the programs we are offering at SSCY are best suited to the unique needs of our unique children!

This study is determining the feasibility of MIG as an intervention tool for caregivers and their child with autism via telepractice. MIG is a parenting experience where you and your child will meet with a counselor virtually (on-line) for weekly one-hour sessions. Through the use of recorded and virtual discussions you will learn to understand what your child is saying and what your child needs from you. You will receive help in setting limits and getting him or her to listen to you. In learning a technique called “Watch, Wait and Wonder” you will get to know your child better. there is also an aspect of this program that helps you explore your own upbringing and understand how it affects your parenting.

Parenting children with greater health, developmental, or behavioral support needs may lead to higher stress and mental health concerns due to increased parenting demands. Poor parent mental health can negatively affect children’s rehabilitation outcomes and family wellbeing. Specifically, poor parent mental health can lead to additional difficulty navigating complex treatment plans and attending healthcare appointments. Despite these risks, we know very little about the mental health needs of these caregivers in Manitoba. We aim to better understand the mental health, support, and stress management needs of caregivers whose young children (ages 0-5 years) are receiving or waiting for services. In the first part of this study, we will ask caregivers to complete an online survey that will ask questions about their mental health, supports, and service needs. In the second part, we will ask service providers what they think would help caregivers of children with higher needs and how services could be changed to better support families. the results will help us see how services and service providers can adapt and develop supports to meet these families’ needs. The Hearts & Minds Lab at the UM wants to know about your parenting experiences and well-being! Parents of children waitlisted or accessing services at SSCY through the Child Development Clinic, FASD Clinic, and Neonatal Follow-up Clinic are eligible.

Cerebral palsy is the most common physical disability in children. These children can experience difficulties in moving, maintaining posture, solving problems, talking and eating. The purpose of this study is to describe the current prevalence of cerebral palsy in Manitoba. We hope to better understand how many children living in Manitoba are affected by this condition, the birth characteristics of these children, and the extent to which their day-to-day function may be impaired. This study will also help us identify where in Manitoba children with cerebral palsy currently live and if there are any differences in the services that we offer to children living in different areas in Manitoba. The information gained from this study will help us better understand the population of children who currently suffer from cerebral palsy in Manitoba. Understanding the prevalence of cerebral palsy, as well as the characteristics of disease experienced by Manitoban children will help inform the treatment and services offered to children with cerebral palsy and their families in Manitoba.

Children who are born with cardiac defects are known to be at greater risk for neurodevelopmental impairment later in life. Conotruncal heart abnormalities are one type of heart defect that typically requires surgery after birth. A recent study has suggested that in before birth children with conotruncal heart abnormalities have enlarged part of the brain known as the cavum septum pellucidum (CSP). The purpose of this project is to determine the relationship between CSP size and neurodevelopmental outcomes of children born with conotruncal heart abnormalities in Manitoba. For this project we will use historical data to determine neurodevelopment scores of children with conotruncal heart abnormalities. We will then look at their ultrasound images and measure the CSP size to determine if there is any associated between low neurodevelopmental scores and CSP size. The results from this project could help physicians better understand outcomes of children with conotruncal heart abnormalities, provide a better predictor of outcomes in these children and allow for earlier interventions for these children to improve their outcomes.

Autism Spectrum Disorder (ASD) is a disorder that affects how children socialize, communicate, and behave. in Canada, approximately 1/66 school-aged children have ASD. It is important to be able to diagnose children with ASD, because once a child is diagnosed, the healthcare team can help the child connect with the right supports in order to reach their full potential. 

ASD is diagnosed clinically, which means there is no specific blood test or medical image that can give the diagnosis. Instead, doctors and healthcare teams make the diagnosis, sometimes with help from a diagnostic tool. The ADOS-2 is an in-person diagnostic tool often used for this purpose. During the COVID-19 pandemic, however, in-person assessments have been minimized to keep families and healthcare providers safe. The Tele-ASD-Peds is a diagnostic tool developed at the Vanderbilt Kennedy Centre in Nashville, Tennessee, for virtual diagnosis of ASD. If this virtual took is found to be effective, it could be used not only during the pandemic, but also in the future for patients and families who live in northern or remote communities. Virtual appointments may also make diagnosis happen more quickly, which could allow the child to connect with supports sooner. The goal of this study is to describe SSCY Centre’s initial use of the Tele-ASD-Peds during the COVID-19 pandemic, and to consider how the tool helps in the overall clinical diagnosis of ASD. This study will also add to the ongoing research regarding the use of the Tele-ASD-Peds.

Researchers from the University of Manitoba and physicians at SSCY Centre are working together on a cross-Canada project to find ways to support and empower families of children with suspected developmental delays as they wait for formal care.

The research team will make a coaching package for families to use while they wait for formal care. This package will have a coach for parents to talk to, online learning, and can connect parents who are also waiting for formal care. The package will be given to 175 families (75 in Manitoba) to use while they wait for formal care. Another group of 175 families (75 in Manitoba) will not get the package, and will wait for formal care the same way families do now. At the start of the study, at 9 months, and at 18 months, the families in both groups will be asked questions that assess if the package is helping them while they wait or not.

Cerebral palsy (CP) is the most common motor disability in children. Estimated prevalence across the globe ranges from 1.5 to more than 4 per 1000 live births. Children with CP are prone to osteoporosis, a disease characterized by low bone mass and deterioration of bones. Bone fragility is associated with multiple risk factors, including nutritional problems, use of antiseizure medications, and limited mobilization, all of which can be present in children with CP. Osteoporotic bones are weaker and prone to low-trauma fractures. Fractures significantly affect the health of children with CP, causing pain, hospitalization, and missed days at school. The prevalence of osteoporosis, its risk factors and its natural history is poorly understood within the pediatric CP population. Also, no published guidelines currently describe required monitoring of osteoporosis during routine follow-up of CP children. The goal of our study is to determine the prevalence and predictors of osteoporosis in children with CP living in Manitoba. These findings could be used to improve osteoporosis prevention strategies in this high-risk population.

The goal of this project is to learn about children and youth in Manitoba who were exposed to alcohol before birth. We hope to learn about the mental health of these children and youth, as well as how they think, behave, and feel. We also hope to learn more about their school skills, their memory skills, and how they are doing with day-to-day activities. We currently lack a consistent way of tracking assessment information for these children and youth. As such, we will look at information of children and youth who have been seen by the psychology team at the Manitoba FASD Centre. We will take this information and create a database. This database will help us to answer four main questions The first is what type of information is measured for each brain domain and how is this information measured? The second is what information is missing and would be helpful to have? The third is how we can better spread out resources to children and youth who will likely have FASD? The fourth is what are some differences between children and youth who do and don’t have FASD? This database can be used by multiple healthcare professionals and will help us to work together and improve the care of children and youth seen at the Manitoba FASD Centre.

Our FASD Centre is doing a project to describe the developmental profile of preschool children with FASD seen by the Manitoba FASD Centre over the past 11 years. We will describe the demographic, language and motor/sensory profiles of children under 5 who have been seen at the Manitoba FASD Centre. We will also be looking at any behavioral difficulties identified in preschoolers seen at the Manitoba FASD Centre. This will help us to better understand and identify preschool presentations, support earlier diagnosis, and facilitate appropriate interventions at young ages.

Our FASD Centre is part of a multi-site chart review that is collecting diagnostic information from FASD Centres across Canada, to confirm whether certain functional issues may be particularly common in children with neurodevelopmental disabilities. By comparing and contrasting individuals affected by Fetal Alcohol Spectrum Disorder (FASD), Autism Spectrum Disorder (ASD), and Cerebral Palsy (CP), it is hoped that the study will show that all three patient groups have similar patterns of brain impairment and could benefit from similar treatment recommendations and interventions.

The information gathered will also be useful in determining the risk factors and prevalence of the disorders regionally, as well as providing valuable information to communities and governments to improve service provision and support for individuals and families impacted by these disorders across Canada.

A Child Development Councilor with Children’s DisAbility Services is conducting a study on the effectiveness of a self-directed on-line parent training and support program for parents of newly diagnosed preschool children with Autism Spectrum Disorder. The purpose of this research is to develop and evaluate an on-line parent training and support program that will support parents during the wait time between their child receiving a diagnosis of Autism and receiving formal treatment services.

Our Neuromuscular Clinic is part of the Canadian Neuromuscular Disease Registry (CNDR), which is a national research project based at the University of Calgary.  The purpose of the CNDR is to build a database of people suffering from neuromuscular disease across Canada.  The CNDR database will collect medical information about people suffering from Duchenne Muscular Dystrophy (DMD), Myotonic Dystrophy (DM) Types 1 and 2, and Guillane Barré Syndrome. Finally, the database will collect contact information and the diagnosis of people suffering from any other neuromuscular disease or disorder.

By collecting detailed information on people with DMD and DM, the CNDR hopes to increase access to research opportunities.  The CNDR also hopes that continued collection of health information will help to improve the consistency of care across the country.  By collecting contact information and diagnosis for people suffering from other neuromuscular diseases, the CNDR plans to help people with uncommon conditions in finding research opportunities.  This network will provide better information on the number of people and location of people with each disease.  This will allow the CNDR to work with various groups to improve available funding and research opportunities within these diseases.

Our Neonatal Follow-Up Program is working on a cross-Canada project to improve the cognitive and language outcomes of premature newborns born <29 weeks gestation. Long term complications of prematurity, including delays in development, are very common.

From previous research it is known that there are interventions which are done after hospital discharge which have improved cognitive and language skills in children born preterm. These interventions vary in intensity, setting, timing and approach and many of them are a “package” of treatments which are complex or costly to provide. The components of the early intervention programs that are effective have not been studied.

This study involves trying out simple feasible interventions or a part of a “package” of proven treatments that are acceptable to a group of local experts and a parent representative. Every 3 to 6 months, the team will review whether the intervention is meeting its goals and it will be adapted and improved. This will happen over a 2 year period in 12 Neonatal Follow-up clinics across Canada, who will talk regularly with each other and learn from each other’s experiences using proven quality improvement techniques. Information about cognitive and language abilities of children born preterm at <29 weeks gestation who are 18 to 24 month old will be collected as part of another existing study to see whether this strategy works to improve the abilities of children born preterm.

Researchers from the University of Manitoba are studying what constitutes a successful transition for young adult Manitobans with Cerebral Palsy. In this study, we want to learn about, and define, what “successful” transition looks like from the perspective of those who have experienced this process.

People who are eligible are those 18-30 years old, speak/understand English, live in Winnipeg (and in Manitoba for at least 10 years) and use some type of assistive technology (e.g. mobility device, computer access device(s), communication device).

The study involves a one-time interview. Participants will be asked some questions relating to their experience with transitioning to adult healthcare services. Each young adult participant will also be asked be asked to identify a key support person (family member, partner, spouse or friend) and a key service provider (teacher, home care worker, therapist, employment counsellor, etc.) who will also be asked to participate in a one time interview.

This study is a chart review, and will investigate the preschool clinical-neurodevelopmental outcomes (including use of allied health services) of children diagnosed with Hypoxic Ischemic Encephalopathy (HIE) admitted to the two main neonatal intensive care units in Manitoba (Health Sciences Centre and St. Boniface).

Our aim is to analyze our own Province’s data to assist in improving the counseling of families, the planning of follow-up, and improving the quality of care of children with HIE in Manitoba.

Objectives:

1. To determine the frequency of children diagnosed with HIE in Manitoba who underwent therapeutic hypothermia (TH).
2. To describe physician’s compliance to current guidelines for the initiation and monitoring of TH.
3. To determine the frequency of neurodevelopmental impairment among pre-school children diagnosed with HIE in the neonatal period.
4. To describe the frequency of utilization of allied health services among children diagnosed with HIE.

Almost 3,000 very low birth weight (<1500 grams) preterm infants are born and cared for in the Neonatal Intensive Care Units (NICU) in Canada every year. Because of their prematurity, these infants require help in order to survive. These infants are very vulnerable to serious illnesses, such as chronic diseases of the lungs, intestines, eyes, and brain as well as serious infections which can cause death or long term effects after going home.

Most preterm infants do not receive enough compounds that are known to help provide protection against developing some of these serious illnesses. One compound that has been found to be of importance is in human milk and is called “lactoferrin”. It is an iron-containing protein found not only in human milk but also in milk from mammals. Lactoferrin and other compounds in human milk help create an environment for growth of beneficial bacteria in the infant’s gut which prevents “bad bacteria” from growing. Because small preterm infants do not receive enough of this protective compound from the human milk or formula they are fed, the addition of lactoferrin as a supplement to the infant’s feed on a daily basis is being considered.

However, because human lactoferrin is very expensive and difficult to produce and obtain other forms of lactoferrin are being considered. Bovine lactoferrin, coming from cows, is thought to be the optimal supplement because of its close chemical structure to human lactoferrin.
The purpose of this study is to find out whether adding bovine lactoferrin once daily compared to not adding it, will have an effect on death or major illnesses of prematurity such as chronic lung disease, infections, necrotizing enterocolitis (a serious condition causing gut inflammation) or serious changes to the developing eye called retinopathy of prematurity.

The study treatment will be started within the first week of life until the infant reached 34 weeks corrected gestation. At 24 months corrected age, infants will have a neurodevelopmental assessment that will look at the child’s cognitive, language, and motor skills. In addition, information on additional motor, vision and hearing skills will be gathered.

Research in our lab has shown that parents of children with neurodevelopmental disorders (NDDs) experience greater parenting stress, especially in light of the COVID-19 pandemic. The SPYKids Program seeks to provide a first step to encouraging hope for parents of children with NDDs on waitlists and improve their ability to cope with family stressors through a single session consultation model. SPYKids has been designed for families on waitlists at local organizations, such as Specialized Services for Children and Youth (SSCY), St.Amant, MATC, and KIDTHINK. The purpose of this single session intervention (SSI) is not to completely resolve challenges but to provide parents with some skills, encouragement, and support in the interim while waiting for more comprehensive services. In the summer of 2021, we worked with a team of parents with lived experience of lengthy waitlists for specialized services to identify specific needs of families. These parents discussed barriers and emotions related to accessing assessment, diagnosis and treatment services. Through several collaborative sessions, they expressed support for the development of a single session intervention to help address urgent family mental health and parenting needs while families are on waitlists. The resulting program is now ready to be piloted with the support of community agencies like SCCY. Once the program has been shown to be a feasible approach to supporting families, we will conduct additional funded studies to evaluate the efficacy of the SSI.