Like so many other companies and organizations, the Arthritis Foundation (AR) is taking advantage of social networking by setting up and utilizing an online registry. Launched in June of 2010, the Arthritis Internet Registry (AIR)is the result of a combined effort of the AR working with the National Data Bank for Rheumatic Diseases as well as Quest Diagnostics. Their goal is to get about 5% of the 1.5-3 million people in the U.S. who have rheumatoid arthritis (RA)to register online. This would be more than 100,000 people whose conditions could be studied and researched over a long period of time.
Currently, most registries are through doctors and medical institutions, with less than 50,000 individuals being studied. Robert Plenge, MD, PhD, a rheumatologist and geneticist at Harvard Medical School, is one of the primary leaders of this project and believes that the AIR will help provide much needed information on rare forms of RA and hard to get family histories. A similar registry managed by the Cystic Fibrosis Foundation has been credited with helping to nearly double the life expectancy of people with the disease.
The AIR registry consists of a questionnaire that takes about 30 minutes to complete. Kathleen Ferrel, a retired physical therapist, is an AF volunteer who has worked hard to get the registry going. She gives several examples of the the information they are seeking:
Functional level
Medications
Activity
How often do you visit your doctor
How many times you've seen a rheumatologist
Out-of-pocket expenses
Dr. Plenge goes on to say that one of the most exciting features is the collection of blood samples that will be analyzed with the information obtained from each person. Dr. Plenge stresses the security measures taken by the AIR and that all information gathered is private and secure. "There's no link to personal information and no way I, as a researcher, could ever actually contact that person."
The privacy, ease and hope that the AIR offers are strong incentives to get people to participate. For a couple of years now, social media and networking has made people celebrities overnight and have taken small businesses to the next level. Just think what it can do for medical research. There is an endless amount of important information out there and now it can be accessed.
Are you registered with the AR or any other medical registry? If not, do you think you would register for this or any other medical condition? What are your views on the internet being used for research?
.jpg)
Like so many other companies and organizations, the Arthritis Foundation (AR) is taking advantage of social networking by setting up and utilizing an online registry. Launched in June of 2010, the Arthritis Internet Registry (AIR)is the result of a combined effort of the AR working with the National Data Bank for Rheumatic Diseases as well as Quest Diagnostics. Their goal is to get about 5% of the 1.5-3 million people in the U.S. who have rheumatoid arthritis (RA)to register online. This would be more than 100,000 people whose conditions could be studied and researched over a long period of time.
