Portrait of a Clinic: Columbia University

The HD center at Columbia University Medical Center in upper Manhattan is not glamorous. The big old buildings on 168th Street are gloomy, and the HD clinic itself is modest— just a small waiting room and a handful of cramped exam rooms. But this clinic has been one of the highest-recruiting sites for Enroll-HD. The reasons for this success are straightforward: Staff who are focused on HD, a wide range of expertise, and a decades-long commitment to the families who come to the clinic. “Part of the reason we’ve been able to recruit so many people is that these are people we’ve been with for a long time,” says neurological nurse practitioner Carol Moskowitz, who has worked with HD families since 1976. “They know that we’re always there for them. They know that if they call my cell phone, I will pick up.”

The clinic, formally known as the Columbia University HDSA Center of Excellence at the New York State Psychiatric Institute, is unusual in a number of ways. Two site coordinators work on HD full time, rather than splitting their time with patients who have other movement disorders. Patients are also seen for free, mostly because the HD clinic has arranged for free space at the Psychiatric Institute just down the block. That arrangement not only removes a burden from patients, it also adds another layer of privacy since people can be treated without getting an insurance company involved.

The staff also includes a diverse range of medical experts, from speech pathologists to neurologists and psychiatrists. “It’s amazing—they offer everything there,” says Edye, who has been coming to the Columbia clinic for about eight years. (She asked that her last name not be used to protect her privacy.) Like her, many people have been coming to this clinic for years—and the staff have come to know multiple generations in the same family. “The key is that we have relationships,” says neurologist Karen Marder, MD, MPH, the clinic director. “Because we’ve had long relationships with families, we’re always active, always seeing a new generation. We know them, so they feel comfortable with us.”

Getting started

In the early 1980s Moskowitz became more involved in HD care after meeting Marjorie Guthrie, a pioneering advocate for HD families. Guthrie would send patients to her for help, and Moskowitz began to realize that HD families needed a dedicated medical team that included expertise in multiple domains. At the time Columbia was conducting world-class genetic research under the leadership of Nancy Wexler, PhD, but there were no dedicated resources for HD patients. In 1991, Moskowitz proposed to behavioral neurologist Richard Mayeux, MD, that Columbia start a clinic devoted to HD. He brought the proposal to the chair of psychiatry, who immediately agreed. Mayeux paired Moskowitz with Marder, arranged for a social worker to be hired, and launched the clinic. All four of them are still on staff.

“The key is that we have relationships,” says neurologist Karen Marder, MD, MPH, the clinic director.

Since then the clinic has expanded to include two additional neurologists, a psychiatrist specializing in movement disorders, a social worker focused exclusively on HD, a genetic counselor, a speech pathologist, and an occupational therapist who also provides physical therapy. Two coordinators manage the clinic’s day-to-day operations: Ronda Clouse is a research coordinator and Paula Wasserman organizes both research studies and clinical care. A research assistant also helps translate for the 10-15% of the families who come to the clinic for treatment and speak only Spanish.

With this relatively large staff and dedicated space Wasserman and Clouse are able to set up efficient visits for patients and their caregivers, allowing them to see five specialists in a row rather than coming back for repeat visits on subsequent days. Specialists can also talk to patients together in what Moskowitz calls “sandwich” visits. “I’ll start with a patient, then [occupational therapist] Ash Rao will come in, and I’ll sit on the sidelines while he continues the interview,” she says. It helps keep all the medical staff working together and means that patients like Edye get everything they need in one visit. “They have great services,” she says. By comparison her sister, who lives far away in another state, goes to a clinic where the doctors and social workers don’t fully understand the disease and its implications. Services are minimal and she has had difficulty both finding a psychiatrist who knows anything about HD and getting her disability applications approved.

The robust infrastructure at Columbia also makes it easier to recruit large numbers of people into Enroll-HD. “Recruiting is not difficult,” says Wasserman, but for many clinics it can be difficult to find the time to schedule the visits required to register new participants. Says Wasserman: “We are able to handle the numbers.” Both Edye and her husband have signed up (he as a control).

Wasserman says that most people do want to participate in the study, as do their spouses. “They find it’s a good way to contribute to science, a good way to give back,” she says. Many were already part of previous studies, such as COHORT or the UHDRS-99, so they’re familiar with the tests and evaluations that long-term studies require. But the staff at Columbia is careful to make it clear that getting involved in Enroll-HD is purely optional. Anyone is free to opt out. “If they don’t want to participate, regardless of the reason, we fully respect that,” says Wasserman. “We’ll still love you and take care of you. Any contribution is wonderful.”

Practical answers

The core staff at Columbia has about 80 years of collective experience in HD between them, which translates into a wealth of practical knowledge—tricks and tips that are specific to HD and can make families’ lives easier. The clinic acts like a clearinghouse for knowledge; the staff learn from patients and families and they pass along that new information to others, says Moskowitz. Much of it takes the form of down-to-earth advice on living well with HD. She gives a few examples: Don’t eat olives because it’s too easy to choke. Make sure you get lots of sleep. If you want to go out to a restaurant, eat a snack first and review the menu online at home because you may have to wait.

The core staff has about 80 years of collective experience in HD between them.

Some of the knowledge can also be transformative, such as the best way to get a policy from a long-term care insurance company. Just because someone has HD doesn’t mean they can’t improve their quality of life, says Moskowitz. “When the person leaves the clinic, they’ve got their diagnosis, but they’ve also got [a list of] four things they have to do,” she says. “Eventually—not necessarily on the first visit, but eventually—they’re empowered to change situations so they feel more comfortable.”

While the first business of the clinic is treating patients and helping families, they consider studies like Enroll-HD a high priority, says Wasserman: “Everybody on the team helps with recruitment.” Anyone who comes to the clinic who is cognitively able to understand the informed consent process is offered the opportunity to become involved, and the staff try to make it as quick and convenient as possible for them to enroll in the study. “It’s a tremendous gift when people participate in research,” says Marder. “You need to do what works for them.”Because the study involves follow-up visits at least once a year, it can be good for patients as well. “We follow up with people,” says Wasserman. “That’s what is great about studies like COHORT and Enroll-HD—it’s a form of outreach, it’s a way to keep people connected to the clinic that might not otherwise stay connected, or for people to come in once a year and deal with HD.”

Regular yearly follow-ups means that sometimes the clinic staff notice changes or problems that might have otherwise been overlooked. For people who have mild or no symptoms and no ongoing medical issues, the study is a reminder to check in on their health.

Particularly for spouses and caregivers, joining a study can also be a way to do something constructive in the face of a  terrible disease. “I like to participate in whatever way I can,” says Edye. “This way, hopefully other people can benefit.”

This story was originally published in the May 2013 issue of Enroll!