e-Health-com News
“Für chronisch kranke Menschen kann das Leben vielfältige Herausforderungen bereithalten – ganz besonders dann, wenn die Patienten an so genannten „seltenen Erkrankungen“ leiden, über die oftmals sogar Fachleute nur wenig wissen.
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ePractice EU
“On 13 September 2011, a new health information website (Malattie Rare Lazio – MRL, in Italian) dedicated to rare diseases became available from the Lazio regional government portal.
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Russell Working, Health Care Communication News
“Mayo Clinic cardiologist Sharonne N. Hayes was at a women’s heart health symposium at the Minnesota-based hospital in 2009 when a former heart-attack victim stopped her to chat.
The patient, Katherine Leon, asked about a rare and potentially fatal condition. “Dr. Hayes,” she said, “what’s Mayo doing to study spontaneous coronary artery dissection?”
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Frank Irving, EHRWatch
“Doctors at Mayo Clinic in Rochester, Minn., are using social media and online networking to help them study spontaneous coronary artery dissection (SCAD), a poorly understood heart condition that affects a few thousand Americans every year.
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Ron Winslow, Wall Street Journal
“When Katherine Leon began feeling crushing chest pain six weeks after the birth of her second child, doctors were perplexed about what was causing her symptoms.
Ms. Leon was then 38 years old and healthy, and doctors didn’t believe she was having a heart attack.
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Brandom BW. Mayo Clinic Proceedings, 86(9)
In the current issue of Mayo Clinic Proceedings, Tweet et al describe a novel solution to a perpetual problem that clinical researchers must address: How can researchers effectively and ethically identify and recruit adequate numbers of research participants, particularly if the research protocol involves participants having a rare condition? Absent such recruitment, a study will fail.
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Tweet MS et al, Mayo Clinic Proceedings, 86(9)
OBJECTIVE:
To develop and assess the feasibility of a novel method for identification, recruitment, and retrospective and prospective evaluation of patients with rare conditions.
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Molly Merrill, Healthcare IT News
“Social media and online networking could provide a novel way to recruit patients with rare diseases for clinical studies, according to a new study by the Mayo Clinic.
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iHealthBeat
“A computer program that analyzes facial characteristics outperformed physicians in identifying signs of acromegaly, a rare hormone disorder, according to a study published in the Journal of Clinical Endocrinology and Metabolism, Reuters reports.
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Amy Dockser Marcus, Wall Street Journal
“A new clinical trial found that lithium didn’t slow the progression of Lou Gehrig’s disease, but the findings released Sunday also showed that the use of a social network to enroll patients and report and collect data may deliver dividends for future studies.
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Wicks P et al, Nature Biotechnology, 2011
Patients with serious diseases may experiment with drugs that have not received regulatory approval. Online patient communities structured around quantitative outcome data have the potential to provide an observational environment to monitor such drug usage and its consequences. Here we describe an analysis of data reported on the website PatientsLikeMe by patients with amyotrophic lateral sclerosis (ALS) who experimented with lithium carbonate treatment. To reduce potential bias owing to lack of randomization, we developed an algorithm to match 149 treated patients to multiple controls (447 total) based on the progression of their disease course.
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Nancy Shute, NPR
“Finding health information can be hard if you have a rare disease. Those patients often have to become experts themselves. Social media like Facebook make it easier for people with rare disorders to find each other and share that expertise. That’s helping patients and medical research.
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PRNewswire
“With so few people affected by rare diseases, how does a group of less than 90 patients across Canada make their voices heardon a life-and-death issue such as access to treatment? Barry Katsof, President of the Canadian Association of PNH Patients, says his group is turning to social media to ask others to take a stand with them in the fight for their lives.
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Healthcare IT News
“Americans who have health issues are now using the Internet to expand their support networks to include online peers, especially if they have a rare disease, according to a new report by the Pew Internet Project and California HealthCare Foundation.
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Matthew Herper, Forbes
“Twenty-two years ago Francis Collins, who would go on to head the Human Genome Project and run the National Institutes of Health, was part of a team that found the gene that, when mutated, caused cystic fibrosis, a deadly childhood disease in which the lungs fill with mucus and the pancreas does not make digestive enzymes.
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Sarah, blog Bien-être
“Facebook, Twitter ou encore My Space, les réseaux sociaux ne cessent de voir croître leur nombre d’utilisateurs. Un succès qui s’accompagne également de critiques régulières sur l’intérêt même de leur existence.
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Maria del Carmen Torres Broch, TSBblog
“La Federación Española de Enfermedades Raras (FEDER) y el Grupo de Tecnologías para la Salud y el Bienestar, de la Universidad Politécnica de Valencia (ITACA-TSB), han establecido una alianza estratégica, a través de la firma de un convenio de colaboración.
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Jay Parkinson, The Future Well
On Saturday, I went to Pecha Kucha in New York City where Steven Holl, Stefan Sagmeister, and many others spoke about their work with all proceeds going to Architecture for Humanity’s non-profit division. One of the presenters was Zachary Lieberman. Zachary has created The Eyewriter:
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Matthew Holt, The Health Care Blog
“Gilles Frydman is one of the leading ePatients. He started and runs ACOR (Association of Cancer Online Resources) and has discussed the role of engaged patients with rare diseases at the last few Health 2.0 Conferences. We’ll be hearing more from Gilles in the US this year, but first we’re inviting him to present at Health 2.0 Europe.
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Sarah Arnquist, The New York Times
“After Amy Farber learned she had the rare and fatal disease called LAM in 2005, she became determined to increase and speed up research into her illness with the hope of finding a cure in her lifetime.
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