BU CTSI     Clinical and Translational Science Institute

ReSPECT Registry

If you are having trouble filling out this online survey, please contact the ReSPECT Registry Team for assistance at 617-414-1971 or (toll free) at 1-877-505-4455. We will help you fill out the survey online or over the phone.

Participating in the “Respect” Registry:

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 registry record.

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 Farrah Belizaire, MS, Clinical Research Recruitment Manager, 72 E. Concord Street, E713, Boston, MA 02115. Email: Farrahab@bu.edu

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.

Give us Feedback

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.