What are the responsibilities of a vice chair of the Diabetic Retinopathy Clinical Research Network (DRCR.net)?

As a vice chair of the DRCR.net, I participate in weekly operations group meetings that oversee logistical planning and implementation of the various DRCR.net clinical trials. Each vice chair is responsible for a group of sites. These sites can communicate any issues, feedback, or questions they may have to the vice chair. In addition, vice chairs also sit on the executive committee to contribute to the broader mission of the DRCR.net.

Walk me through the process of designing a DRCR.net trial.

Anyone, including researchers or clinicians not part of the network, can submit a trial idea to the DRCR.net. In fact, many of the trials that the DRCR.net has completed were initiated by investigators. Typically, someone will submit an idea for a trial, which is then presented by the submitter to the operations group committee. If it passes the operations group committee, then the trial design is presented to all the investigators at the annual summer or winter meeting.

The DRCR.net investigators discuss the clinical benefits, feasibility, and interests related to the trial. If there is enough interest, then a protocol development committee is formed. This committee is usually composed of investigators who are actively involved in the DRCR.net, meaning that they are investigators with high enrollment rates. Various members of the executive and operations committees also sit on the protocol development committee. As the protocol develops, additional discussion and feedback occurs at the annual summer and winter meetings, and then the protocol is finalized.

How is the Retina Research Center (RRC) geared toward managing clinical trials?

The RRC runs parallel to our clinic, which allows our research patients to have scheduling flexibility. Patients at the RRC are seamlessly integrated into our clinical schedules. The RRC has its own facilities including a separate entrance, ETDRS testing lanes, and exam lanes. This gives our research patients a concierge-like feel when participating in our trials .

I cannot stress enough the need for an excellent research staff. Patients in clinical trials are committing a significant amount of their time toward the improvement of medical care and management. We recognize this, and we want to give these patients a consistent and tailored experience when they participate in clinical trials with us. Our research coordinators work only at RRC and do not have other clinical duties. This allows our staff to focus on learning and knowing the trial protocols in detail.

How do you present the opportunity to participate in a trial to a skeptical patient?

Patients who participate in clinical trials are part of a special group. It takes a unique personality grounded in a selfless attitude. Clinical trial investigators have an obligation to be honest with their prospective patients. Even if a patient is not interested, I still discuss with them the research that is being performed for their diagnosis. A doctor interacting with a patient who is skeptical of joining a trial may need to spend more time with that patient to review trial details. Often, a skeptical patient may simply have a couple of questions or need something clarified. Essentially, it is about putting in additional time at the beginning to find out if the patient’s hesitation is due to a small detail that they may not fully understand.

After these patients have had their questions answered, they have become informed patients. Well-informed patients make the best research participants. Sometimes a patient’s personality or interests do not match the trial. That is not a problem. We have great therapy for a lot of current diagnoses, and we tell our patients that further down the line new therapies may be available.

What do you enjoy most about retina meetings?

I enjoy sessions that involve challenging cases or that invite conversation, such as Retinaws seminars or “Ask the Experts” sessions. These symposia illustrate the camaraderie of being in such an interesting specialty. I particularly enjoy events where we all have an opportunity to share our own experiences, pearls, and challenging cases.

I also enjoy connecting with colleagues and friends from other cities. Spending time with these friends at events and dinners is a real treat. Retina is a relatively small community of physicians compared with other specialties, and I like to stay active in our community. n