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Cold hands are one of several warning signs of Raynaud’s Phenomenon

Close up of girl wearing mittens - way to prevent Raynaud'sRaynaud’s phenomenon is a condition in which there is an exaggerated blood vessel tightening in response to cold or emotional stress, restricting blood flow to certain areas of the body – most often the fingers, but sometimes the toes, ears, or the end of the nose.

The exaggerated vascular response (tightening) in Raynaud’s phenomenon is called vasospasm, which often occur in response to cold or emotional stress. With vasospasm, the fingers turn white and cold then blue with dilated veins followed by relaxation of the vessel and normal blood flow causing a red ‘flushing’

According to a recent article published in The New England Journal of Medicine, Raynaud’s affects approximately 3 to 5 percent of the population – women are more often affected than men. Raynaud’s phenomenon occurs in two forms – primary and secondary. Primary is the most common and has no underlying cause. Secondary is when Raynaud’s phenomenon occurs in combination with another autoimmune disease like scleroderma, rheumatoid arthritis, Sjogren’s syndrome or systemic lupus erythematous. The article also states that people who work with certain chemicals, like vinyl chloride, or vibrating tools like a jackhammer are also susceptible to secondary Raynaud’s. Continue reading

Walk10Blocks helps get sedentary people moving

The Vancouver Coastal Health Research Institute published a news article about the Walk10Blocks app, commenting how researcher-consumer-patient group collaboration can facilitate knowledge translation. The Walk10Blocks team thanks the Vancouver Coastal Health Research Institute and other groups for sharing the Walk10Blocks app with their network.

Below is an excerpt of the article:

Researcher-consumer-patient Group Collaboration Facilitates Knowledge Translation

Two people walking with Walk10Blocks app on mobile phoneWalk10Blocks helps get sedentary people moving.

The development process behind a new app to help sedentary people get moving shows how unique partnerships between researchers, consumers, and patient groups can lead to innovative health research. Vancouver Coastal Health Research Institute (VCHRI) scientists Dr. Linda Li and Dr. Teresa Liu-Ambrose credit the collaboration between themselves and consumer and patient groups, including Arthritis Consumer Experts, the Alzheimer Society of B.C., and CARP (the Canadian Association of Retired Persons), for the development of the Walk10Blocks app.

Dr. Linda Li, professor in the Department of Physical Therapy at the University of British Columbia and Canada Research Chair in Patient-Oriented Knowledge Translation at UBC and Arthritis Research Canada. 

“We’re very proud of this collaboration. It’s a perfect example of how researchers getting together with patient and public groups can come up with innovative ideas and actually make things happen,” says Dr. Li.

“I’ve built apps before for other research projects and it usually takes a very long time. Walk10Blocks only took one year from conception to testing launch in the community. When consumer and patient groups are involved–they know what works and they’re really driven to get things done fast and done right.”

Walk10Blocks is the first app designed specifically to help adults get over the hurdle of starting regular physical activity by encouraging them to walk 10 blocks a day (or about one kilometre per day), which according to research may help delay or minimize risk of dementia and improve cardiovascular and joint health over time. 

Walk10Blocks, which is currently available for free on iTunes, can be installed on an iPhone 5S or above. The app uses the phone’s core motion sensor to collect data about a person’s movement activity. The app converts this activity into a walking log, which tracks the distance travelled throughout the day and how many theoretical city blocks have been covered. The goal is to encourage sedentary people to walk at least 10 blocks per day. The app offers motivating, friendly alerts, has easy-to-read measurements, helps set reasonable walking goals, and awards badges for meeting goals.

By downloading the app, Walk10Blocks participants have also agreed to take part in an innovative research study that uses the app to collect data through surveys. Information gathered for the study includes patients’ fatigue, pain, mood, stress, and walk ratings to give researchers a better understanding of what individuals’ walking opportunities look like. The study also aims to help users recognize and understand their own physical activity levels and sedentary behaviour, create awareness about neighbourhood resources, and determine the overall feasibility of the app.

Development of the app started with one of Drs. Li and Liu-Ambrose’s research groups consulting with patient groups and receiving a grant from the Improving Cognitive and Joint Health Network (ICON), a Canadian Institutes of Health Research knowledge translation catalyst network.

“What we heard loud and clear through our consultations was a desire for more efficient, effective use of what we know about physical activity and its health benefits in terms of managing diseases, especially for people whose health may worsen without it.”

Early on, the groups met with Dr. Liu-Ambrose, researcher at the Djavad Mowafaghian Centre for Brain Health and the Centre for Hip Health and Mobility, who shared with them current evidence with relation to exercise and cognitive function. According to Dr. Li, the group was most interested in findings from a nine-year observational study in the U.S. that showed that walking approximately 10 city-sized blocks results in better cognition and better brains.

“That specific information had our consumer groups almost jumping for joy because to them it was finally something concrete that could be used and brought back to stakeholder groups as the minimum amount of physical activity you needed to do for positive effect,” according to Dr. Li.

Dr. Liu-Ambrose, who is also Canada Research Chair in Physical Activity, Mobility, and Cognitive Neuroscience, says the group got quite motivated by the idea that you don’t necessarily need to run a marathon to have a positive impact on brain health. “This led to the concept of the app and Cheryl Koehn, president of Arthritis Consumer Experts and head of our arthritis patient group, really has been the driving force behind it.”

“The evidence is accumulating to suggest that exercise is beneficial–but where there is a void is how to put it into action. The app is a bit of that component,” she adds. “When everyone has a common goal and shared interests, I think that’s when we make good progress.”

“And so in many ways, recommending regular activities, such as moderately paced walking, seems to be a pretty reasonable approach for promoting physical and cognitive health over the lifespan.”

Les « données massives », un outil majeur pour les services de santé au Canada ?

Un sondage pour connaître l’opinion du public quant à l’utilisation d’ensembles volumineux de données à des fins de recherche

Big Data Collaborators' logoOBJECTIF DE CETTE ÉTUDE :
Dans le domaine des soins de santé, les données massives sont des ensembles complexes et volumineux de données contenant de l’information recueillie systématiquement sur la santé des patients et leur utilisation des systèmes de santé.

Le but de cette étude est de mieux comprendre le niveau de connaissance et l’opinion du public et des patients quant à l’utilisation des données massives dans la recherche en santé au Canada. Parmi les éléments examinés, mentionnons : Continue reading

Is ‘Big Data’ a big deal for healthcare in Canada?

A survey to learn what people think about the use of large data sets for research purposes

PURPOSE OF THIS STUDY:
Big Data, in health care, is large and complex sets of data that have information routinely collected on patients’ health and their use of health care systems.

The purpose of this study is to understand the public’s knowledge and opinions about the use of Big Data in Canadian health research. This includes:

  • Current level of knowledge about Big Data;
  • Willingness to participate in projects using Big Data;
  • Major concerns about the use of Big Data;
  • Interest in learning more about research using Big Data;
  • Preferred modes of receiving more information about Big Data

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Demande de rétroaction de patients sur le biosimilaire étanercept (Sandoz) dans le traitement de la PR, de la SA et de la PJI

Stick man holding megaphoneSouffrez-vous de polyarthrite rhumatoïde, de spondylarthrite ankylosante et de polyarthrite juvénile idiopathique ou prodiguez-vous des soins à quelqu’un qui en souffre ? Vos commentaires seraient précieux.

Santé Canada définit le biosimilaire (parfois appelé produit biologique ultérieur ou PBU) comme un médicament biologique qui présente une similarité établie avec un médicament innovateur (tel que Enbrel®) et qui a fait son entrée sur le marché après l’innovateur auquel il se réfère.

Contrairement aux médicaments plus communs à petites molécules, les médicaments biologiques présentent généralement une complexité moléculaire élevée et sont sensibles aux modifications dans les pratiques de fabrication. Les biosimilaires ne sont pas identiques à leurs produits innovateurs parce que leurs caractéristiques chimiques ne peuvent être copiées avec précision pendant le processus de fabrication. Par conséquent, les biosimilaires possèdent des profils uniques en matière d’efficacité, d’immunogénicité et d’innocuité qui diffèrent de leurs produits innovateurs respectifs.
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Call for patient input on biosimilar etanercept (Sandoz) for RA, AS, and pJIA

Stickman with megaphone calling for patient inputDo you have rheumatoid arthritis, ankylosing spondylitis or polyarticular juvenile idiopathic arthritis or care for someone who does? We need your valuable input.

Health Canada defines biosimilars (sometimes referred to as subsequent entry biologics or SEBs) as biologic medicines that are similar to, and would enter the market after, an approved originator biologic (such as Enbrel®).

Unlike the more common small-molecule drugs, biologics generally exhibit high molecular complexity, and are sensitive to changes in manufacturing practices. Biosimilars are not identical to their originator products because their chemical characteristics cannot be precisely duplicated during the manufacturing process. Therefore, biosimilars may have unique efficacy, immunogenicity, and safety profiles that are different from their originator.

The Common Drug Review (CDR) is currently welcoming patients and their caregivers to provide input to patient organizations on the manufacturer’s submission for biosimilar etanercept for the treatment of rheumatoid arthritis, ankylosing spondylitis and polyarticular juvenile idiopathic arthritis. The originator biologic, or reference product, is etanercept (Enbrel®).
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