The Scleroderma Foundation Teams Up with Traitwise PDF Print E-mail
Tuesday, 16 February 2010 14:40
The Scleroderma Foundation has teamed up with Austin, TX company, Traitwise Incorporated, to launch a unique survey to poll thousands of scleroderma patients and their caregivers. Data from the survey will be shared with researchers nationally and internationally in an effort to improve understanding and treatment of scleroderma.

By gathering answers about everything from symptoms to family history of disease to quality of life - and then comparing every answer to every other answer - the survey mechanism promises to tease out previously unsuspected patterns that can lead to new diagnostics, treatments, and even a cure for this chronic autoimmune disease that afflicts approximately one in every thousand people.

"As common as it is and despite the heroic efforts of clinicians and researchers, scleroderma still isn't well understood," said Scleroderma Foundation CEO Robert Riggs. "The Traitwise survey gives us a chance to assemble and analyze more pieces of the puzzle and really move research forward."

The unique Traitwise approach to data security allows users to volunteer information without fear that the information will be shared or used to identify them. Once it's made anonymous, data will be made available to researchers through the Scleroderma Foundation. "We understand that the information we seek is sensitive and personal," said Executive Vice President Michael Simpson of Traitwise. "So we answer every user's privacy expectation with an iron-clad commitment to protect their personal information."

Source: MMD Newswire
 
More articles :

» Study Indicates Scleroderma Mortality Rates Being Underestimated

patients have a significantly reduced life expectancy that is most likely being underestimated, delegates have heard. Most studies on scleroderma survival are based on prevalent cohorts, where no limit is placed on disease duration at the time of...

» Unite Against Scleroderma A Great Success

Our very first Scleroderma Awareness Walk, "Unite Against Scleroderma" was a great success. Sunday May 1st was a dream that became a reality, simply because family and friends of the Foundation also wanted the community of Trinidad and Tobago to be...

» More Research Needed to Understand Scleroderma

With an estimated 14 million cases worldwide, you would think more would be known about , a chronic, debilitating disease that can lead to the hardening and tightening of skin and connective tissue. But it seems that we don’t know enough: “We...

» The Mississauga Support Group To Host Annual Fundraiser

The Mississauga Support Group of the Scleroderma Society of Ontario will host its annual fundraising dinner and dance gala on April 2 at the Oasis Convention Centre. Funds raised will go to the Scleroderma Society of Ontario to fund research,...

» Amira Pharmaceuticals Announces Efficacy of LPA1 Antagonist in a Preclinical Model of Scleroderma

Amira Pharmaceuticals, Inc. announced today that their collaborators, Andrew Tager, M.D. and Flavia V. Castelino, M.D. of Massachusetts General Hospital, Harvard Medical School, will present a preclinical proof-of-concept study which demonstrates...

» Scleroderma and Pregnancy

In an ideal world, men and women would be able to start their families with no difficulties or problems.  However, there are many issues that can complicate matters and Scleroderma and Pregnancy is one of those issues. It is very important to...