Health and Medical News and Resources

General interest items edited by Janice Flahiff

[News release] First patient-led research registry for arthritis patients launched

First patient-led research registry for arthritis patients launched.

From the 20 May 2015 University of Alabama news release

CreakyJoints, an online, nonprofit, patient support community with more than 80,000 members, has launched Arthritis Power, the first patient-led, patient-generated, patient-centered research registry for arthritis, bone, and inflammatory skin conditions. Focusing on rheumatoid arthritis, psoriasis, psoriatic arthritis as well as numerous other musculoskeletal conditions, the goal of Arthritis Power is to securely collect health data from tens of thousands of arthritis patients to support future research.

achy joints

Arthritis Power includes a steering committee of patients called the Patient Governor Group that identifies research needs for study development and prioritizes research requests from the CreakyJoints patient community around the world. The new initiative is launched in partnership with the University of Alabama at Birmingham. Arthritis Power is supported in part by the Patient Centered Outcomes Research Institute (PCORI), a nonprofit, nongovernmental organization created by Congress as part of the Patient Protection and Affordable Care Act of 2010. Its overall goal is to enhance informed health-care decision-making and to improve health-care delivery.

Usually patients with rheumatoid, psoriatic arthritis or other chronic conditions learn about opportunities to participate in research from their health-care providers. Arthritis Power will offer a variety of clinical trial and other research opportunities, allowing patients to proactively decide when and how to participate. Securely donated data will be used by patients, universities, research facilities, and physicians to better understand how to fight these diseases and perhaps, contribute to finding elusive cures. Arthritis Power data will be collected using a smart phone, laptop, desktop or tablet where there is an Internet connection.

“Patient-centered research means that we can more effectively use big data to answer questions that are important to those living with these illnesses. This opportunity will produce results that help patients weigh the value of health-care options according to their personal circumstances, conditions, and preferences,” says Jeffrey Curtis, M.D., M.S., MPH, William J. Koopman Endowed Professor in Rheumatology and Immunology in the UAB Division of Clinical Immunology and Rheumatology.

 

May 28, 2015 Posted by | Medical and Health Research News | , , , | Leave a comment

Accelerating Medicines Partnership – National Institutes of Health (NIH)

Accelerating Medicines Partnership – National Institutes of Health (NIH)

Great component – sharing data! Note below the bolded underlined portion

From the 4 March 2014 press release

The Accelerating Medicines Partnership (AMP) is a bold new venture between the NIH, 10 biopharmaceutical companies and several non-profit organizations to transform the current model for developing new diagnostics and treatments by jointly identifying and validating promising biological targets of disease. The ultimate goal is to increase the number of new diagnostics and therapies for patients and reduce the time and cost of developing them.

AMP will begin with three to five year pilot projects in three disease areas:

For each pilot, scientists from NIH and industry have developed research plans aimed at characterizing effective molecular indicators of disease called biomarkers and distinguishing biological targets most likely to respond to new therapies.

Through this cross-sector partnership, which will be managed through the Foundation for the NIH (FNIH), NIH and industry partners are sharing expertise and resources — $230 million — in an integrated governance structure that enables the best informed contributions to science from all participants. A critical component of the partnership is that industry partners have agreed to make the AMP data and analyses publicly accessible to the broad biomedical community. These pilot projects will set the stage for broadening AMP to other diseases and conditions.

AMP Partners

Government Industry Non-Profit Organizations
FDA

NIH

AbbVie

Biogen Idec

Bristol-Myers Squibb

GlaxoSmithKline

Johnson & Johnson

Lilly

Merck

Pfizer

Sanofi

Takeda

Alliance for Lupus Research

Alzheimer’s Association

American Diabetes Association

Lupus Foundation of America

Lupus Research Institute

Foundation for the NIH

Geoffrey Beene Foundation

PhRMA

Rheumatology Research Foundation

USAgainstAlzheimer’s

Budget: 5 years [$230 Million (Rounded) Total Project Funding]

($Millions) Total Project Total NIH Total Industry
Alzheimer’s Disease 129.5 67.6 61.9
Type 2 Diabetes 58.4 30.4 28
Rheumatoid Arthritis and Lupus 41.6 20.9 20.7
Total 229.5 118.9 110.6

 

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March 13, 2014 Posted by | Medical and Health Research News | , , , , , , , , , , , , | Leave a comment

[Press release] NIH to partner with biopharmaceutical companies and nonprofits to diagnose/treat diseases

From the 5 February 2014 (US) National Institutes of Health press release

The Accelerating Medicines Partnership (AMP) is a bold new venture between the NIH, 10 biopharmaceutical companies and several non-profit organizations to transform the current model for developing new diagnostics and treatments by jointly identifying and validating promising biological targets of disease. The ultimate goal is to increase the number of new diagnostics and therapies for patients and reduce the time and cost of developing them.

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[At the risk of breaking copyright, this came via Twitter]

Screen Shot 2014-02-06 at 6.44.29 AM

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AMP will begin with three to five year pilot projects in three disease areas:

For each pilot, scientists from NIH and industry have developed research plans aimed at characterizing effective molecular indicators of disease called biomarkers and distinguishing biological targets most likely to respond to new therapies.

Through this cross-sector partnership, which will be managed through the Foundation for the NIH (FNIH), NIH and industry partners are sharing expertise and resources — $230 million — in an integrated governance structure that enables the best informed contributions to science from all participants. A critical component of the partnership is that industry partners have agreed to make the AMP data and analyses publicly accessible to the broad biomedical community. These pilot projects will set the stage for broadening AMP to other diseases and conditions.

AMP Partners

Government Industry Non-Profit Organizations
FDANIH AbbVieBiogen Idec

Bristol-Myers Squibb

GlaxoSmithKline

Johnson & Johnson

Lilly

Merck

Pfizer

Sanofi

Takeda

Alzheimer’s AssociationAmerican Diabetes Association

Lupus Foundation of America

Foundation for the NIH

Geoffrey Beene Foundation

PhRMA

Rheumatology Research Foundation

USAgainstAlzheimer’s

Budget: 5 years [$230 Million (Rounded) Total Project Funding]

($Millions) Total Project Total NIH Total Industry
Alzheimer’s Disease 129.5 67.6 61.9
Type 2 Diabetes 58.4 30.4 28
Rheumatoid Arthritis and Lupus 41.6 20.9 20.7
Total 229.5 118.9 110.6
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February 6, 2014 Posted by | Medical and Health Research News | , , , , , , , , , | Leave a comment

Sick from Your Stomach: Bacterial Changes May Trigger Diseases Like Rheumatoid Arthritis

Rheumatoid Arthritis Fingers

Rheumatoid Arthritis Fingers (Photo credit: david__jones)

From the 11 June 2012 ScienceDaily article

The billions of bugs in our guts have a newfound role: regulating the immune system and related autoimmune diseases such as rheumatoid arthritis, according to researchers at Mayo Clinic and the University of Illinois at Urbana-Champaign.

Larger-than-normal populations of specific gut bacteria may trigger the development of diseases like rheumatoid arthritis and possibly fuel disease progression in people genetically predisposed to this crippling and confounding condition, say the researchers, who are participating in the Mayo Illinois Alliance for Technology Based Healthcare.

The study is published in the April 2012 issue of PLoS ONE.

“A lot of people suspected that gut flora played a role in rheumatoid arthritis, but no one had been able to prove it because they couldn’t say which came first — the bacteria or the genes,” says senior author Veena Taneja, Ph.D., a Mayo Clinic immunologist. “Using genomic sequencing technologies, we have been able to show the gut microbiome may be used as a biomarker for predisposition.”…

 

…Researchers found that hormones and changes related to aging may further modulate the gut immune system and exacerbate inflammatory conditions in genetically susceptible individuals…

..

“The gut is the largest immune organ in the body,” says co-author Bryan White, Ph.D., director of the University of Illinois’ Microbiome Program in the Division of Biomedical Sciences and a member of the Institute for Genomic Biology. “Because it’s presented with multiple insults daily through the introduction of new bacteria, food sources and foreign antigens, the gut is continually teasing out what’s good and bad.”

The gut has several ways to do this, including the mucosal barrier that prevents organisms — even commensal or “good” bacteria — from crossing the lumen of the gut into the human body. However, when commensal bacteria breach this barrier, they can trigger autoimmune responses. The body recognizes them as out of place, and in some way this triggers the body to attack itself, he says….

June 12, 2012 Posted by | Medical and Health Research News | , , , , | Leave a comment

   

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