Up to 20 sites in the US & 4 sites in Canada will enroll 3,500 participants into this study registry & bio-repository. They will be enrolled into 1 of 4 Lupus Cohorts (groups). Most of the data collected will be collected from participants medical records. Participants will complete questionnaires on-line, using the clinic computer or their own computer from home. This registry does NOT provide medications. Blood, urine, saliva & stool samples are collected at each visit and sent to the bio-repository in the US for future research. They will not be tested immediately. Results will not be available to participants. The data & bio-samples will be kept by the Lupus Research Alliance for at least 15 years.

Research shows that scoliosis-specific exercises can improve pain & quality of life. Delivery of Schroth exercises via online methods has not been studied. Adolescents with Adolescent/Juvenile Idiopathic Scoliosis will be recruited. Participants will be randomized to the Schroth Scoliosis specific online exercise group or the control group. The control group has the opportunity to switch over to the exercise group after 6 months. The 6-month Schroth program consists of 10 sessions: 6 1-hr long initial online training sessions over 2-3 weeks, followed by 45-min.-long follow-ups via videoconference. 3D Ultrasound imaging of the spine will help measure curve angles/vertebra rotation; Surface Topography will help assess cosmetic changes.

We hope to help Indigenous young adults (age 16-25) and their families living in Maskwacis, Alberta with long-term health conditions manage their health. Our research study entails offering individualized support from an Indigenous Patient Navigator. To learn more about this pathway and how the Indigenous Patient Navigator may be able to help you, please contact us!

We are studying the effect of a mind-body treatment for people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) after COVID-19 infection. We will compare to people who got ME/CFS another way. ME/CFS affects things like the nervous system, immune system, and metabolism. We think central sensitization might make the symptoms worse. Central sensitization is when nerves get too excited. Our team is studying a treatment to improve things like quality of life, fatigue, pain, and brain function. We will also study some outcomes related to body chemistry. Our team recognizes that ME/CFS and Long COVID are serious, debilitating, biomedical conditions.

Atogepant has been approved to treat episodic migraine in adults by Health Canada but has not been studied or approved in children. The purpose of this study is to see if atogepant is effective and safe for the treatment of episodic migraine in children. This research study plans to include 450 participants with episodic migraine. Participants will receive one of 3 treatments: low dose atogepant, high dose atogepant, or placebo. The study medication is given as a pill that is taken daily. Participants and the study doctor will not know whether they are receiving atogepant or placebo. Participants will track their headaches in an eDiary. There will be 7 visits in total and these will include questionnaires, bloodwork, and ECG.

Patients with severe respiratory failure who are placed on ECMO (extracorporeal life support) will be followed to determine survival and neurologic outcome at one year later, and whether these outcomes are different from a matched group of children not placed on ECMO.

Small gaps in the intestinal wall ("tight junctions") allow water and nutrients to pass through, while blocking the passage of harmful substances. When these gaps become loose, the gut becomes permeable ("leaky gut"). This may allow bacteria or toxins to pass into the bloodstream leading to inflammation. We do not know yet what triggers Crohn’s disease; however we know that environmental factors (as diet) may change the gut microbes (“dysbiosis”) and when combined with “leaky gut” this can initiate chronic inflammation in susceptible people. During this study we will assess if prebiotics (dietary fibers like oligofructose-enriched inulin) and “Low n-6 PUFA diet” can effectively reduce "leaky gut" and thus lower the risk for Crohn’s.

This trial will test whether adding in tovinontrine (a medication) to standard of care medications for heart failure will reduce the chances of being hospitalized for heart failure or dying from heart disease.

Strategies and treatments to decrease the risks faced by older people with frailty having surgery are urgently needed but have not been widely developed or studied. The strongest findings suggest that exercise before surgery may improve older people’s ability to walk and stand after surgery and lower rates of complications. We propose to study a home-based exercise program compared to usual care. Using a randomized trial design performed across fourteen different hospitals, we will evaluate whether participating in this home-based exercise program, which we already know can be performed by older people with frailty, leads to lower levels of patient-reported disability and complication rates after surgery.

ALS is a disabling, rapidly progressive, and fatal neurodegenerative disorder that is heterogeneous meaning that each person’s disease is different. Not only is this variability in symptoms poorly understood, but it can make diagnosis and treatment difficult. The Comprehensive Analysis Platform To Understand, Remedy and Eliminate ALS (CAPTURE ALS) is a national platform that will collect, store, analyze and disseminate large amounts of data (e.g. clinical and MRI data) and biosamples from patients with ALS and healthy controls. These data and biosamples will be securely shared with researchers across the world to help understand the causes of ALS, the variability that exists between patients and help identify new treatments.