If you have been diagnosed with Lupus by a physician you can enroll in this research project.
Your confidence in the privacy of your personal information is of the highest concern to the NDB 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.
Consent to Participate in NDB Research
The National 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.
As a participant you will be asked to complete detailed questionnaires, taking up to one hour, at six month intervals; to notify us of any change in address; and to give us permission to contact other doctors or hospitals for additional information about your care. 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 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 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, 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
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.
What Information Will Be Used or Disclosed?
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. In addition, information from hospital or physician records used to clarify the information you provided.
Who May Use and Disclose the Information?
The following parties are authorized to use and disclose your health information in connection with this research study:
Who May Receive / Use the Information?*
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.
Your Access to Research Information
You will not be allowed to see or copy information in the NDB research records.
Can I be identified personally?
No, with 3 exceptions:Expiration
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.
Consent
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
- Print a copy of this page by clicking File and Print from your browser menu. You must have a printer attached to your computer.
- Or, save a copy of this page to your own computer by clicking File and Save. Select a location for the file that you will be able to find again.