Being a Research Participant

Research studies are at the heart of all medical advances. When you take part in clinical research, you help doctors and researchers learn more about disease and improve health care for people in the future. Research studies can lead to advancements in treatment, new or improved therapies, and a better understanding of how physicians should care for people with arthritis.

Please email us with the following information:

1. Full name
2. Diagnosis
3. Which study you're interested in
4. Whether or not you already receive care at Penn Medicine

A member of our research team will then contact you.

As a research participant, there are a few things you need to keep in mind:

1. DECISION - Please remember that it is your decision to participate in a study. This means that if you are eligible for a study and consent to take part, you are agreeing to follow through with all study procedures explained to you. This includes coming in for scheduled appointments, filling out questionnaires, and maintaining open communication with the research staff.
2. HONESTY - While participating in a research study, please be honest with the research staff about anything that you may experience while in the study. Please note that some of the information we ask for is to protect your safety and to protect the safety of others who may benefit from the results of the research. Some questions are also asked to collect general data on vasculitis. Dishonest answers will tamper with the data and can lead to inaccurate results for the study.
3. COMMUNICATION - As mentioned before, maintaining communication with our research staff is essential in your participation. Some studies have frequent visits associated with them. Research staff will need your cooperation in scheduling these visits during times that are the most convenient for you and your schedule. Some studies require check-in points conducted over the phone. It is important that you answer any calls/emails from us as it will impact your standing in the study, as well as the results.

Yes. A member of our research team will give you instructions on how to send us your medical records.

Absolutely! Research participants may withdraw at any point. All you have to do is let the research staff know -- they will handle it from there. There might be some follow-up questions as to why you want to withdraw, but it's so that we can learn and improve. It is important to note that enrolling in a study, or declining to enroll, or withdrawing from a study will not impact your care at Penn Medicine or with your physicians.

It depends on the study. Many studies do offer payment for participating. Most also cover the cost of parking for your study visits.

All research staff within Penn Medicine are trained to maintain the highest level of patient privacy and security. Within the Inflammatory Arthritis Program, your information is kept on a secure server, accessible only to members of the research staff. Any data collected during the study may be released to outside institutions, but your name or other identifying information will not be associated with it. Papers containing patient information are kept in locked areas, and samples collected for studies are stored in a protected lab that's only accessible to select research staff.

Informed consent - a voluntary agreement to participate in research

Investigational product - a drug or device that is currently being tested

Longitudinal - over an extended period of time

Placebo - an inactive substance that looks like the drug or treatment being tested