Dr. Seth Goldberg makes clear that his approach to treating kidney disease is a complex one.

“I’m not a technician. I’m not a mechanic,” the New Jersey native says. “I’m not doing the same physical procedure over and over again.”

Instead, he relishes the challenge of synthesizing laboratory and imaging information and patient history to arrive at the best approach to deal with a person’s polycystic kidney disease, a disorder affecting more than 12 million people around the planet. 

That’s Goldberg’s specialty, and his goal in treatment and research is to allow patients to avoid the unpleasant prospect of dialysis or transplant for as long as they can by extending kidney function as much as possible.

What is polycystic kidney disease?

It is a genetic disorder passed on from parent to child, in most cases. It leads to large cysts developing within the kidneys on both sides. It is a very slowly progressive disease. It takes decades before you start seeing other manifestations of it. … As patients get older, their kidney function tends to deteriorate to the point where they may require dialysis or transplant. Until very recently, there haven’t been any approved medications to slow down the progression of the disease.

Tell me about the Polycystic Kidney Disease Clinic, which you head at Washington University.

Over the past seven or eight years, we’ve expanded the clinic. We’ve grown it considerably, where it is now four to five times the size it was initially. In doing so, we’ve been able to attract a lot of research, a lot of drug companies that are developing possible therapies for polycystic kidney disease, and in doing so I’ve been able to offer those treatments to our patient base in the setting of a research study.

What’s the prognosis?

About 50 percent of patients will require dialysis or transplant by the age of 60. There is a large spread as to when you might expect that to happen. We actually have a handful of patients in their mid-to-late 30s who are approaching the need for transplant. We’ll also have the other extreme as well. We’ll have some patients in their 70s or 80s who may never require dialysis or transplant because they have the good fortune of having a slowly progressing form of the disease. 

There is no cure for it?

There is no cure for it yet, but it is something we’re actively working on. We have been involved right now in three different drug-company sponsored trials. The actual mutation and how it causes the disease in the kidney was only isolated maybe 20 years ago, so we’ve haven’t known about it for a long time. 

Despite having 20 years of trying to work on it in a laboratory setting with basic science research and animal models, it is still not clear why exactly that mutation causes those cysts to form. … Nonetheless, by knowing some of the pathways as far as why these cysts develop, there have been some targeted therapies that have come about in the last 10 years, at least in the research setting. They work well in the animal models but, of course, it is not always the case that what happens in the mouse is going to happen in the human.

Can it be prevented?

There is no prevention for it. It is an inherited disease. … A parent who has the disease has a 50 percent chance of passing it on to each of their children. … Not everybody has a family history. We see about 20 percent of our patients with polycystic kidney disease who won’t have any family history of it. We suspect that in the vast majority of those patients, they are the founder of a new mutation. 

What can you say about promoting general kidney health?

For general kidney health, people would want to maintain good hydration. We do recommend for patients to at least be cautious when they use medicines in the ibuprofen family. Not to single out any one specific brand, but anti-inflammatory medications can have effects on the kidney. … Fortunately, most routine bloodwork will include a basic metabolic panel which will have a measure of kidney function. That’s helpful because kidney disease is usually asymptomatic. When the kidneys don’t work well, you rarely have any pain associated with it. … For patients who have diabetes, that’s obviously a very important risk factor for kidney scarring and kidney disease as well as high blood pressure. People with diabetes should have their urine protein measured at least on a yearly basis.