If you have been diagnosed by a physician with rheumatoid arthritis,
osteoarthritis, fibromyalgia or any other rheumatic condition you can enroll in
this research project. If you are not sure if you have a rheumatic condition please see the FAQ for the
definition.
For a description of the enrollment process, please see the Patients' Home
Page. Your confidence in the privacy of your personal information is of the highest
concern to the INDB staff. We will never give anyone any information that can
identify you by name. We take great care to respect your privacy and we comply
with all privacy requirements. You will never be asked to pay any fee or
purchase anything – participation in the project is absolutely free and
voluntary! Please read the consent form below carefully and click the "I consent to
participate" button to proceed. The International Data Bank for Rheumatic Disease is conducting a long-term
study of the impact of arthritis and other rheumatic diseases upon the
individual. With this study we hope to determine physical and monetary
consequences caused by arthritis and other rheumatic diseases and to help
guide research into better treatments. We invite your participation.
By clicking on the button below this form, you are authorizing the use and
disclosure of your health information collected in connection with your
participation in this research study. Your information will only be used in
accordance with the provisions of this consent form and applicable law. If you
decide to terminate your participation in the study, you may revoke your
authorization, except to the extent that the law allows us to continue using
your information. Your health information related to this study that you provided to us,
including, but not limited to your medical history, symptoms, treatments, side
effects, hospitalizations, infections, and work history. The following parties are authorized to use and disclose your health
information in connection with this research study:
The parties listed in the preceding paragraph may disclose your health
information to the following persons and organizations for their use in
connection with this research study:
*Your information may be redisclosed if the recipients described above are
not required by law to protect the privacy of the information. You will not be allowed to see or copy information in the INDB research
records. Your authorization for the use and/or disclosure of your health information
will continue indefinitely. However, you may withdraw from the research study
at any time. By clicking the button below you indicate that you have read this consent
form and agree to participate in the study, and that you accept that
personal information will be electronically supplied to the researcher to
document their participation (such as name, e-mail name, and date). To retain a copy of this consent for your records
Consent to Participate in INDB Research
As a participant you will be asked to complete detailed
questionnaires, taking up to one hour, at six month intervals and to
notify us of any change in address or email address. The questionnaires will
ask questions about your arthritis or other rheumatic disease, the treatments
you are getting, the effects of the disease on your function, the amount of
pain, and the costs which you incur. You may be asked to communicate by email
or talk with a telephone interviewer from the study staff from time to time.
You will continue to receive questionnaires even if you move or decide to
receive your medical care from other doctors. We cannot and do not guarantee
or promise that you will receive any benefits from this study, but your
participation will help increase knowledge of and interest in arthritis and
other rheumatic diseases.
No experimentation is involved in this
study, and the study will not alter your care in any way. Your decision
whether or not to participate will not prejudice you or your medical care.
This is a long-term study, meaning that there is no fixed number of months or
years in the study. If you decide to participate, you are free to withdraw
your consent and to discontinue participation at any time without prejudice to
you or effect on your medical care.
There are no risks or costs to you
involved in this study, and no payment will be provided to you. The
information you give us will not be disclosed to anyone in any way which would
reveal your identity. Any data that may be published in scientific journals
will not reveal the identity of the subjects. Information may be provided to
US Federal and regulatory agencies, but your identity will be protected unless
required by law.
If you have any questions, we expect you to ask us.
If you have additional questions later, email us at webquest@arthritis-research.org
or call us at 316- 263-2125 or 1-800-323-5871 and we will be happy to answer
them.
For further information please call the following who are
associated with this research and to whom you may address complaints about
this study, as well as questions about research and your right as a research
patient:
Use and Disclosure of your Medical Information
What Information Will Be Used or Disclosed?
Who May Use and Disclose the Information?
Who May Receive / Use the Information?*
Your Access to Research Information
Can I be identified personally?
No, with 2
exceptions:
Expiration
Consent