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For parents of children with spinal muscular atrophy (SMA), known SMA carriers, and adult patients, thoughts about carrier testing, prenatal testing, and reproductive decision-making exist at a nexus. The recent availability of a promising new gene therapy adds further complexity. Little is known about the knowledge and attitudes of these individuals in this area; understanding their views will help us better care for SMA patients. In this dual-phase study (survey followed by interviews), we aim to address this knowledge gap and explore the knowledge and attitudes of parents of affected individuals, adult SMA carriers, and adult SMA patients related to gene therapy, carrier screening, prenatal testing, and family planning.

Conditions:
Spinal Muscular Atrophy | Survey | Family Planning | Gene Therapy
Emplacement:
  • University of Alberta, Edmonton, Alberta, Canada
Sexe:
Any
Âges:
18 - 100

This project aims to study people with rare genetic conditions like 17q12 and others with commonly occurring genetic causes of autism and psychiatric disorders to understand how genetic data can improve overall care. The study plans to enroll 240 families with at least one person affected by autism or other neurodevelopmental disorders. It involves a consent procedure, research interview, and a follow-up interview after two years. Genetic testing is important but not standardized for autism treatment. The researchers aim to develop a systematic approach to using genetic data for treatment in the future.

Conditions:
Autism | Developmental Delay | Genetics | Genetic Testing | Precision Medicine
Emplacement:
  • University of Alberta, Edmonton, Alberta, Canada
Sexe:
Female, Intersex, Any, Male
Âges:
Under 90

Transplant recipients are at high risk of severe COVID-19 outcomes. For transplant recipients surviving COVID-19 and/or experiencing the extreme stress associated with the pandemic was not only hard on them but their caregivers as well. Adults with organ transplants are generally excluded from studies because they do not easily fit into standardized protocols used for other high-risk groups. How the pandemic has affected transplant patients and their family physically, mentally and economically has not been investigated. This project will provide the actionable knowledge needed by policymakers to create clinical guidelines, and to support transplant patients and their families.

Conditions:
HSCT | Transplant
Emplacement:
  • University of Alberta, Edmonton, Alberta, Canada
Sexe:
Any
Âges:
Under 100

Three-dimensional ultrasound imaging of the heart is widely available and cost-effective. However, in many patients the heart function cannot be assessed because of poor image quality. Our group has developed a new technique for three-dimensional imaging of the heart – robot-arm assisted 3D Echocardiography to improve image quality. A robot-arm is used to move the probe which transmits the ultrasound and precisely records the position of the probe on the chest. We expect that this method allows to measure the heart function in more patients. This would reduce the need for injections of contrast agents or referrals to magnetic resonance imaging in the future.

Conditions:
Ultrasound | Heart
Emplacement:
  • University of Alberta, Edmonton, Alberta, Canada
Sexe:
Any
Âges:
18 - 90

Family members of young adults admitted to or discharged from AHE, RAH, UAH, and hospitals in Covenant Health, Edmonton Zone, with diagnosis of psychosis (all causes) are recruited to attend an educational program delivered in two hour modules once a week for nine consecutive weeks. The curriculum delivers basic knowledge about psychosis and imparts evidence based skills to family members to effectively support their loved ones. Study results will be used to demonstrate to healthcare services and policy makers that integration of family centred care is possible in the context of serving young adults living with psychosis, is cost effective and leads to better outcomes both patients as well as their supporting families long term.

Conditions:
Schizophrenia | Education | Young Adults | Psychosis | Caregivers | Family | Psychoeducation | Emotional Dysregulation
Emplacement:
  • University of Alberta, Edmonton, Alberta, Canada
Sexe:
Any
Âges:
20 - 80

We are looking for people living in rural communities who are experiencing problems due to their gambling to participate in a research study. This study investigates the effects of providing small incentives for evidence of treatment success. Participants will be randomly allocated to either regular counselling or regular counselling and small incentives. All participants will receive free individual counselling from an experienced counsellor/therapist. The counselling is delivered on-line. Participants will be asked to complete a range of assessments. Compensation is provided.

Conditions:
Gambling | Treatment
Emplacement:
  • University of Alberta, Edmonton, Alberta, Canada
Sexe:
Any
Âges:
18 - 100

COVID-19 has had a significant impact on the lives of many Albertans. Neurological deficits are an increasingly recognized complication of COVID-19, caused by the coronavirus, SARS-CoV-2. Among COVID-19 survivors, 10-30% develop persistent multi-system symptoms termed Long COVID. Neurocognitive impairments are commonly (>25%) reported in Long COVID, together with pain, fatigue and sleep disorders. Thus, the purpose of this study is to investigate if there are inflammatory causes of these neurocognitive symptoms as well as what is the prevalence, risk factors, and predictors of neurocognitive impairments among people with long COVID

Conditions:
Aging | Inflammation | Neurocognitive Impairment | COVID-19 | Long COVID | Post-COVID Syndrome
Emplacement:
  • University of Alberta, Edmonton, Alberta, Canada
Sexe:
Any
Âges:
18 - 100

The purpose of this study is to demonstrate how well the study treatment works and evaluate the safety, and how well you can tolerate any unwanted side effects caused by the study treatment, mavorixafor, in combination with any background therapy being received. Mavorixafor, has been shown in other clinical studies to increase a patient’s white blood cells, including their neutrophils.  Increasing neutrophils in a participant's blood is expected to help their body fight infection. An increase in neutrophils in the blood may not cause any symptoms and can only be observed with blood tests. Mavorixafor, is an investigative drug that has not yet been approved by the regulatory authorities in Canada for the indication in this study.

Conditions:
G-CSF
Emplacement:
  • University of Alberta, Edmonton, Alberta, Canada
Sexe:
Any
Âges:
18 - 100

The Canadian Registry for Amyloidosis Research (CRAR) will serve to connect Canadian patients with physicians and researchers. Participation in the CRAR will help researchers to develop projects and learn more about amyloidosis and enable patients to be kept informed about upcoming research opportunities.

Conditions:
Amyloidosis
Emplacement:
  • University of Alberta, Edmonton, Alberta, Canada
Sexe:
Any
Âges:
18 - 100

The balance between energy intake through food and energy expenditure through physical activity is essential for maintaining a healthy body weight and preventing diseases. Being able to self-monitor metabolic energy levels such as glucose, ketone, or lactate may encourage healthy choices; however, the current methods of measurements involve painful finger prick and costly consumables. We have designed a non-invasive metabolic energy monitoring sensor that can measure various metabolites in the body. In this study, we aim to create AI algorithms that will allow the sensors to accurately predict levels of various metabolites to help develop a novel wearable technology for health and wellness in the future.

Conditions:
Health and Wellness
Emplacement:
  • University of Alberta, Edmonton, Alberta, Canada
Sexe:
Any
Âges:
18 - 65