New Physicians’ Registry Tracks Prevalence and Characteristics of Autoimmune Syndrome Induced by Adjuvant (ASIA)
Until recently, cases of ASIA have been largely anecdotal and shared only informally among physicians, making them difficult to both qualify and quantify. The lack of wide scale and comprehensive reporting has also slowed progress toward diagnosing (and potentially preventing) the epidemic growth in autoimmune illnesses worldwide.
These issues were the impetus behind the creation of a first-of-its-kind registry for ASIA cases. This registry was designed by the editor of Autoimmunity News, Dr. Yehuda Shoenfeld, MD, FRCP of Tel-Aviv University, and Dr. Ricard Cervera, MD, PhD, FRCP of the Hospital Clinic, Barcelona. It will enable researchers to capture data and analyze thousands of global cases of ASIA. The patient questionnaires in the registry will provide a resource for researchers to compare clinical manifestations, to discover common instigators, and to compare the efficacy of treatments. And of course, to conclusively answer the questions, “Do vaccine adjuvants contribute to autoimmune illnesses?”
We recently contacted Dr. Cervera in his Barcelona office to discuss this critical registry.
Q: What inspired you to start this registry?
A: We were inspired by our previous experience with the "CAPS Registry" - an international website-based registry on another rare disease (the "catastrophic" antiphospholipid syndrome) - that we created 20 years ago. The CAPS Registry has allowed us to learn more about the characteristics of this condition as well as its best treatment, thus leading to a decrease of mortality from 70 to 30%. Due to the fact that the ASIA syndrome is another rare disease, we believed that the creation of a similar registry would lead to similar good outcomes.
Q: What has been the response to the registry - both numerically and in terms of perceptions throughout the medical field?
A: Knowledge of the ASIA Registry is progressively growing, and there are currently already several hundred patients whose clinical data has been registered.
Q: How are you getting the word out about the ASIA Registry?
A: The results of this registry are presented in international congresses and published in medical journals and, therefore, more and more physicians are aware of its existence.
Q: What do you hope the Registry will accomplish?
A: We hope that it will allow doctors and physicians to better know the prevalence and characteristics of the ASIA syndrome and to find the best way to prevent/treat it.
Q: Have you thought about what you might do with a compilation of responses? (e.g., a book, a report, a media campaign, etc.?)
A: We will continue presenting the results in the medical congresses and scientific journals. Hopefully, if our data is impressive enough, this can be followed by a media campaign.
Q: How can our readers help promote awareness of the registry, participation by their physicians, and/or the value of this endeavor?
A: They can inform their physicians on the existence and importance of forwarding their clinical data to the Registry.
At CMSRI, we will be closely monitoring the growth and findings of the ASIA registry - watch this space for updates!
by Claire Dwoskin
The Children’s Medical Safety Research Institute (CMSRI) is a medical and scientific collaborative established to provide research funding for independent studies on causal factors underlying the chronic disease and disability epidemic.