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    Want to Help Catalog, Track Autoimmune Diseases?


    Jefferson Adams
    • You can help researchers create a database to know exactly how many people are living with autoimmune conditions.

    Want to Help Catalog, Track Autoimmune Diseases?
    Image Caption: Image: CC--franck blais

    Celiac.com 03/18/2017 - Do you have an autoimmune disease? Does someone you know? Did you know that the numbers regarding autoimmune rates are all over the place, and that incomplete or wrong information can result in delayed or missed diagnoses? Want to help researchers create a database that will help them understand exactly how many people are living with autoimmune conditions?

    Then behold the latest project from ARI, a 501c(3) nonprofit, with a mission "to create a hub for research, statistics, and patient data on all autoimmune illnesses." The project seeks to provide data that will help researchers nail down some basic answers about the numbers of people who live with one or more autoimmune conditions. The ARI website says that the company "operate a national database for patients who suffer from any autoimmune disease."

    ARI's mission is to "reduce the time of diagnosis, support research, compute prevalence statistics, and establish autoimmune disease as a major class of disease so that it receives the awareness of the public, the attention of healthcare providers, and the appropriate funding needed to improve upon existing treatment protocols and disease management strategies."

    This is one reason why Aaron Abend, the founder and president of ARI, decided to create the Autoimmune Registry after his mother was misdiagnosed for 10 years because, based on incorrect statistical data, "doctors thought Sjogren's syndrome was a rare disease with only 37,000 cases in the U.S." Today, researchers agree there are probably 3 million cases in the U.S., so not so rare at all.

    Researchers currently estimate that anywhere from 9 million to 50 million people in the United States have an autoimmune disease. That's quite a wide range. Pinpointing the actual prevalence is part of what ARI will try to do. So, they are reaching out directly to patients to information about diseases like rheumatoid arthritis (RA), lupus, psoriasis, diabetes, Crohn's, celiac disease, Sjogren's syndrome, multiple sclerosis (MS), and many others fall under the autoimmune umbrella.

    The registry is easy to join. It is free to sign up and consists of a simple survey that people with autoimmune diseases answer.

    The information that people provide to ARI remains secure. The data may be used to compile statistics and qualify them for research opportunities, but no identifying information will be shared without permission.

    The hope is that the registry can help researchers connect with people and the data. You can view the registry here.

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  • About Me

    Jefferson Adams earned his B.A. and M.F.A. at Arizona State University, and has authored more than 2,000 articles on celiac disease. His coursework includes studies in biology, anatomy, medicine, and science. He previously served as Health News Examiner for Examiner.com, and provided health and medical content for Sharecare.com.

    Jefferson has spoken about celiac disease to the media, including an appearance on the KQED radio show Forum, and is the editor of the book Dangerous Grains by James Braly, MD and Ron Hoggan, MA.

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    Celiac.com 01/11/2016 - Is celiac disease a disability under the federal Americans with Disabilities Act? The Department of Justice says not necessarily.
    On the heels of a federal lawsuit that claiming that restaurants are violating federal disability laws by charging more for gluten-free food than for non-gluten-free counter parts, a Department of Justice spokesperson has stated that a 2012 civil rights settlement on behalf of Lesley University students with celiac disease does not make the condition a disability in all cases.
    DOJ public affairs specialist, Patrick Rodenbush, said settlement at Leslie University did not set a legal precedent, because the "…settlement enforces the rights of students whose food allergies were disabilities, [but] it doesn't necessarily make celiac disease a disability in all cases."
    This is relevant to a case in California, where federal judge recently denied a motion to dismiss a class action lawsuit alleging P.F. Chang's violates the Americans with Disabilities Act because it charges more for gluten-free items.
    In the P.F. Chang's case, Judge Ronald Whyte denied P.F. Chang's motion to dismiss because, he wrote, that, although the court had not found specific information proving that celiac disease constituted a disability under the ADA, the "plaintiff has pled sufficient facts to support her claim that she has a disability that impacts a major life activity."
    Whyte noted "on a more complete factual record, the court might reach a different conclusion." He also stated that it may be difficult, or impossible for Phillips to prove her claims.
    "The ultimate question is whether P.F. Chang's, in providing gluten-free meals, is providing different products or whether the price differential with regular meals is a pretext for discrimination against those with celiac disease," Whyte wrote.
    At stake is whether or not food vendors, such as P.F. Chang's can charge higher prices for gluten-free foods than they do for non-gluten-free items.
    The results of this case are being watched closely by celiacs and by restaurant companies, because a ruling that establishes that people with celiac disease are covered under the federal Americans with Disabilities Act could conceivably have a serious impact on how the restaurant industry approaches gluten-free food.
    Stay tuned for new developments.
    Source:
    legalnewsline.com 

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