What is the “Respect” Registry?
The purpose of the Respect registry is to match people who want to be told about
research studies to those studies that they might want to be in at Boston University
Medical Campus (BUMC) and Boston Medical Center (BMC).
What is research?
Research is done to answer a question. Research can include many different kinds
of studies like surveys, medical record reviews, tests of medicines or other interventions.
Research is the way new treatments are discovered and tested.
Why join this registry?
There is a lot that we don’t know about how to prevent and treat health conditions
or diseases and stay healthy. Some people may want to join a registry because they
have had or know someone who has some particular health problem. Participating in
research can help find a cure or better way to provide care. Others may want to
join to be a part in finding new ways to treat these problems. This registry will
help match you to research studies that you might want to participate in.
How does this registry work?
First you will fill out a brief questionnaire (see attached). Then, if there are
research studies (including other registries) at BUMC that might be of interest
to you, the registry staff will contact you. If you are already a Boston Medical
Center (BMC) patient, the registry staff will look at your medical records to help
see if a study might be right for you. We may also send you information about studies
that are ongoing. If you want to hear more, the registry staff will have people
who work on those studies contact you. They may tell you more about the study and
ask you some more questions. Then, you will be able to decide if you want to be
in the study or not. Being in any of these studies is voluntary—it is your choice.
There is no charge to you or your health insurance for being in the Respect registry.
You will also receive occasional newsletters to tell you about studies at BUMC and
BMC. Annual updates will be requested from you to identify any changes in your information
and will be kept in the registry with the original information collected. The purpose
of the update is to identify changes in your contact information and to update the
How will my privacy be protected?
Only registry staff will have access to any information collected for the registry.
Your information will be kept locked in file cabinets and in computer files that
are protected by passwords. Your health information will be kept separate from your
contact information. All registry staff members are trained in handling your private
and confidential information.
Are there any risks or benefits?
The main risk, which is unlikely, is that someone else outside the registry could
find out your personal health information. Information in your medical records at
BMC (for all registry members including BUMC/ BMC employees) may become known to
the registry staff. There may be no benefits to you, except to find out about health
research studies at BUMC/ BMC that you might be interested in. Can I change my mind
and leave the registry? Yes. Just contact the registry at 617-638-8862. You can
also send a letter by mail or e-mail to Kimberly Russell-Lucas, MPH, CCRP, Clinical
Research Recruitment Manager, 72 E. Concord Street, E709, Boston, MA 02115. Email:
Do I have to be in this registry to get care at BMC?
No. Being or not being in this registry has nothing to do with the care you receive
at BMC. Whether or not you choose to be included in the registry does not affect
your care you regularly receive at BUMC or BMC. Participation in the registry is
voluntary. Refusal to participate in the registry will involve no penalty or loss
of benefits to which you are otherwise entitled, and you may discontinue participation
at any time without penalty or loss of benefits to which you are otherwise entitled
as a patient at Boston Medical Center.
We appreciate your participation in the Respect registry.
We are happy to answer any questions you may have and would like to hear about your
opinions, ideas, and suggestions for us.
We would also like to hear if you have joined any research studies you have learned
about from your participation in the registry.
Please call us directly at 617-638-8864 or toll free at (877) 505-4455, 9 a.m. to
4 p.m. weekdays. Or email: RESPECT@bu.edu
If you have questions about your rights when you are in studies or registries, you
can call the BUMC Institutional Review Board at (617-638-7207).
By clicking on 'I accept' below, you are agreeing that you have read the information
sheet and understand what is involved in joining the ReSPECT registry.