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UBC Hospital MS Clinic Registry
UBC Hospital MS Clinic Research Registry (Databases) - Invitation to Participate
The number of patients visiting the UBC Hospital MS Clinic makes possible to gather information about attendees with suspected or diagnosed MS and related disorders, such as neuromyelitis optics (NMO). Patients are asked for their permission through a Consent Form” to store their anonymized information in the “UBC Hospital MS Clinic Research Databases (BCMS, NMO and Family History Databases)” for current and future research.
Commonly asked questions
- What kind of information about me is included in the databases?
If you choose to participate, we would include your demographic information (age, date and place of birth, sex, city of residence, etc.), clinical information (symptoms, number of relapses, etc.), and tests related to your standard care at the UBC Hospital MS Clinic (Magnetic Resonance Imaging (MRI), Optical Coherence Tomography (OCT), Evoked Potential (EP), etc.) in the BCMS/NMO databases.
- Who will be looking at my database records?
Your information will be stored in protected electronic databases at UBC. You will be assigned a code number so that your identity (ie. Your name or any other information that could lead to your identification) will stay confidential. In addition, your family history information will be de-identified by a code number. Only the Principal Investigator, Co-Principal Investigators or their delegates (when necessary and under the supervision of the investigator) will have access to information identifying you. The MS Clinic Team may review the databases to find potential subjects for research projects run at the UBC Hospital MS Clinic. Researchers (eg. geneticists, epidemiologists, statisticians) will work with your de-identified records in MS-related research that involves the statistical analysis of de-identified data.
- How will my privacy be protected?
In some cases, we may wish to share some of the coded, de-identified information in the databases with collaborators outside the UBC Hospital MS Clinic Team. This will include linkage to administrative health databases, or sharing in a larger (eg. national) database. We will not use your information in the databases as a commercial property.
Your name, true initials or exact date of birth will not show up in any publication resulting from research using your de-identified data.
Federal and provincial laws protect your legal rights to privacy. These laws require safeguards to insure that your privacy is respected. Your confidentiality will be respected. Representatives of the UBC Research Ethics Board may inspect the databases and health records identifying you by name for monitoring the research as appropriate. The inspection would happen in the presence of the Investigator or his/her designate. No information or records that disclose your identity will be published without your consent. Any information or records that disclose your identity will not be removed or released without your consent unless required by law.
- What are my rights as a research participant?
Taking part in this research is voluntary. You have the right to refuse to agree to all or specific aspects of research (eg. use of clinical information but refusal of a blood sample) without providing any reason for your decision. Your present and future medical care at the UBC Hospital MS Clinic will be the same whether or not you agree to participate. If you choose to participate, you have the right to stop at any time; no new information will go into the databases. By law, we cannot delete the data already collected about you.
Signing a consent form in no way limits your legal rights against the sponsor, investigators, or anyone else, and you do not release the researchers, clinicians or participating institutions from their legal and professional responsibilities.
other questions or concerns
Any questions regarding the research or your participation, either now or at any time in the future, can be addressed to Dr. Virginia Devonshire, Principal Investigator at (604) 822-7131.
If you have any concerns or complaints about your rights as a research subject and/or your experiences while participating in this research, you may contact the Research Subject Information Line in the University of British Columbia Office of Research Services by email at RSIL@ors.ubc.ca or by phone at (604) 822-8598 (Toll Free: 1-877-822-8598).