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WHAT IS A REGISTRY AND WHAT IS ITS PURPOSE? A registry is a research tool that collects information on the health of individuals with a particular disease over time. This information is then used to improve resources available and quality of care for patients. The Canadian Registry for Amyloidosis Research is a Canada-wide registry that captures information from people diagnosed with amyloidosis. Information is then used in a variety of ways to improve amyloidosis care. HOW DOES IT WORK? Direct-to-patient: Information on quality of life is collected directly from the patients themselves. In-clinic: Medical information is collected in specialty medical clinics attended by amyloidosis patients. Your information will be given a coded number. Scientists and other stakeholders studying amyloidosis may approach the registry steering committee to ask for access. If granted they will be able to obtain data for use in expanding their research studies, but they will not be able to access your identifying information. HOW IS THE INFORMATION USED? Access to collected information is strictly controlled through an approval process to protect patient privacy. Common uses of registry data include: • Notifying patients of clinical trials and other research opportunities • Developing standards of care and improving adherence across the country • Advocacy efforts of patient organizations • Research to understand the quality of life impacts on patients and families • Research to better understand amyloidosis • Clinical research for new therapy development
Conditions:
AmyloidosisLocation:
- University of Calgary, Calgary, Alberta, Canada
Sex:
Male, Female, IntersexAges:
18 - 100To study, evaluate, and compare invasive and non-invasive sympathetic nerve activity (fight or flight response) measurements during tests of breathing, a handgrip test (pushing against force), and a cold pressor test (hand in ice water)
Conditions:
Autonomic Nervous SystemLocation:
- University of Calgary, Calgary, Alberta, Canada
Sex:
Male, Female, IntersexAges:
18 - 85This study will measure the motion of 25 healthy participants in front of 8 cameras in a room. The participant will be asked to perform 40 different motions, such as "please lift your right arm in the air". A brief video showing a person performing these motions will help the participant understand exactly what to do. The participant will not have to wear any clothes or devices before, during or after the session which lasts 60 minutes." The participant will receive a brief 5-minute orientation before the 30-minute motion session. The participant will be asked to sign up for 3 sessions over 4 months. Only one subject will be examined at a time. There will not be any other participants near the test area.
Conditions:
Location:
- University of Calgary, Calgary, Alberta, Canada
Sex:
Male, Female, IntersexAges:
18 - 40The Risk Estimation Following Infarction Noninvasive Evaluation - ICD efficacy (REFINE ICD) trial is an international and multi-centered clinical trial. Sudden death prematurely ends hundreds of thousands of lives each and every year. In North American, over seven million adults are heart attack survivors and they have a four-fold higher risk of sudden death compared to persons without a history of heart attack. In post-heart attack patients, the majority of sudden and abnormal rhythmic deaths occur in those with at least mildly reduced heart pumping function (left ventricular ejection fraction/LVEF below 0.50). The implantable cardioverter defibrillator (ICD) has revolutionized the treatment of patients at risk for sudden death. However, current risk assessment approaches can not effectively identify the majority of patients at the risk of sudden death. In the REFINE ICD study, we will use simple and non-invasive test results (through 24-hour ECG or Holter test) to identify abnormal electrical signals from the heart that may be associated with fast and dangerous heart rhythm and result in sudden death. This study will evaluate whether ICD therapy increases the survival rate compared to usual care in heart attack patients with reduced heart pumping function (LVEF between 0.36 to 0.50) .
Conditions:
Location:
- University of Calgary, Calgary, Alberta, Canada
Sex:
Male, Female, IntersexAges:
18 - 80This study will look at whether an investigational drug, called Ampreloxetine, works and how safe it is when taken over several months to treat symptomatic Neurogenic orthostatic hypotension in people with multiple system atrophy (MSA). It will also look at the effects of Ampreloxetine on general well-being and if it can improve symptoms of Neurogenic orthostatic hypotension.
Conditions:
Location:
- University of Calgary, Calgary, Alberta, Canada
Sex:
Male, Female, IntersexAges:
30 - 110We are enrolling patients with nonischemic cardiomyopathy to participate in a clinical and research registry so we can improve our diagnosis, prognosis, and treatment of this disorder.
Conditions:
Location:
- University of Calgary, Calgary, Alberta, Canada
Sex:
Male, Female, IntersexAges:
Under 99About 20% of adults faint regularly. No treatments are proven useful in executed clinical trials. This is a study to test the theory that Atomoxetine reduces the time to a recurrence of faint in patients who have a high likelihood of recurrent fainting. In this study half the patients will receive Atomoxetine in the first 6 months of the study then you will be swapped to an inactive pill called a placebo in the next 6 months or you will be taking the Placebo in the first 6 months of the study, and then you will be swapped over to Atomoxetine in the next 6 months. We will follow patients for a year.
Conditions:
FaintingLocation:
- University of Calgary, Calgary, Alberta, Canada
Sex:
Male, Female, IntersexAges:
18 - 99Chronic Exertional Compartment Syndrome (CECS) of the lower leg muscles significantly limits active individuals from participating in their desired sport activity to the best of their ability. Patients with CECS experience increased pressure in the lower leg muscles related to a restrictive fascia (envelope around the muscle or muscle group), resulting in pain during and after their sport activity. Diagnosis is confirmed with routine compartment pressure testing with a sport medicine physician. This study will compare the effectiveness of Botox® to salt water injections in the affected lower leg muscles for decreasing pain related to sport activity in adults with a confirmed diagnosis of lower leg anterolateral Chronic Exertional Compartment Syndrome, over a 24-week follow-up period. What is Involved? 1) Completion of online questionnaires at Baseline and 2, 4, 6, 8, 12, 16 and 24 weeks follow-up 2) In-person Baseline visit with physiatrists at the Kinesis Medical Centre to be randomized to receive either Botox® or salt water (normal saline) injection in the lower leg muscles 3) In-person follow-up visits at the University of Calgary Sport Medicine Centre at 6, 16 and 24 weeks after injection to measure muscle strength 4) In-person 12-week follow-up visit at the University of Calgary Sport Medicine Centre to perform compartment pressure testing and measure muscle strength
Conditions:
BotoxLocation:
- University of Calgary, Calgary, Alberta, Canada
Sex:
Male, Female, IntersexAges:
18 - 70This study is using a well-know drug called probenecid which is typically used for gout, to alleviate symptoms of opioid withdrawal in people with chronic pain undergoing voluntary opioid tapering.
Conditions:
Location:
- University of Calgary, Calgary, Alberta, Canada
Sex:
Male, FemaleAges:
18 - 100Well-being is crucial for physicians’ professional performance, including the risk of medical errors, work ability, as well as likelihood of attrition, and is thus linked to patient care quality and healthcare systems function. Demanding working conditions and mental health stigma that disproportionately affects female-identifying and gender-diverse physicians hinder self-care and contribute to unhealthy habits and poor well-being. This further limits institutional efforts to recruit and retain a diverse workforce. This study aims to better understand mental health stigma among resident and staff physicians based on their gender identity and explore factors related to stigma around mental illness among physicians. Participants will engage in journaling reflecting on stigma, help-seeking, coping strategies, and perceived gendered experiences based on prompts provided by the researchers.
Conditions:
Mental Health | GenderLocation:
- University of Calgary, Calgary, Alberta, Canada