8/2/2010 The Arthritis Foundation, working in conjunction with the National Data Bank for Rheumatic Diseases and Quest Diagnostics, has launched what many hope will become the largest registry of people with arthritis ever available to researchers.
The Arthritis Internet Registry, or AIR, which went live in June 2010, aims to harness the power of the Internet to connect people with arthritis to clinical investigators.
“The only way to really learn about the natural history of a disease is through a registry,” says John A. Hardin, Vice President, Research, for the Arthritis Foundation. “These diseases play themselves out over decades.”
Why Registries Are Important
In contrast to randomized controlled trials, or RCTs, which seek to enroll a homogenous group of patients – generally people who have very severe arthritis, but who don’t have complicating medical conditions that could muddy the conclusions of the study – patient registries like AIR are more inclusive and more reflective, experts believe, of the way people really live with diseases like arthritis.
Patients who take part in registries, for example, often have lower levels of disease, but more accompanying chronic conditions, like heart disease, depression or osteoporosis, which may complicate treatment options like medications and surgery.
Another important difference between registry-based studies and RCTs is that registries follow patients for many years, and even decades, to watch how a disease changes over time or to learn about the long-term risks of drug treatments, while RCTs may conclude after only a few months.
“The problem is that the only data that was published for years was data from randomized controlled trials,” says Joel Kremer, MD, a rheumatologist and the founder and chief executive officer of the for-profit Consortium of Rheumatology Researchers of North America, or CORRONA registry.
“They’re very valid studies, and they’re necessary evils, if you will, to get a drug approved by the FDA,” he says, “But I think we extrapolate the data from those trials to our everyday patients with some danger, and in order to fill in those gaps, you really need large registries, registries that are representative of what’s happening the country.”
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Jennifer Schafer
(2) back surg. Thanks for the opportunity to speak.
My only surgery has been removal of large nodes from arms, knee and hand twice. When they became painful, I had them removed but unfortunately they do return and they are ugly. Always wear mid-length sleeves. My hands are contracted, especially the right.
I worked as nurse-manager of an active cardiac-cath lab for the first 15 years of my RA diagnosis then my doctor ordered I go on disability. I am now officially retired.
I am thankful for how well I am doing. I remember my mother and her crippling pain. suppria
At first, RA didn't seem to be a major problem. It sure had a major impact upon my life and mobility.
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