Panel Calls for Earlier Detection, Clearer Pathways in Rare Glomerular Disease

Despite expanding treatment options for rare glomerular diseases such as immunoglobulin A nephropathy (IgAN) and focal segmental glomerulosclerosis (FSGS), health systems continue to miss opportunities to identify young, otherwise healthy patients in primary care, experts at a Cleveland Population Health Roundtable said, calling for electronic health record (EHR) flags and better referral pathways.

Early Recognition, Proteinuria Control Are Key to Managing Rare Glomerular Diseases

A panel from Cleveland Clinic, University Hospitals (UH), and MetroHealth convened for a Population Health Roundtable on August 18, 2026, in Cleveland, Ohio, hosted by The American Journal of Managed Care^® (AJMC^®). The experts explored how health systems can identify, refer, and treat patients with rare glomerular diseases within existing chronic kidney disease (CKD) care pathways. Topics included disease recognition in primary care, specialty medication referrals and access, and the role of guidelines and digital tools.

The discussion, moderated by Salem Almaani, MBBS, MS, staff nephrologist and founding director of the Cleveland Clinic Glomerulonephritis Center, specifically focused on IgAN and FSGS, which often affect patients in early adulthood and can progress silently. Approximately 50% of patients with FSGS and persistent nephrotic-range proteinuria progress to end-stage kidney disease within 3 to 8 years of diagnosis, Almaani noted, underscoring the importance of early proteinuria control, which is associated with better outcomes.

Recognizing Glomerular Disease and Tailoring Treatment

Nissreen Elfadawy, MD, vice chair of the department of medicine and regional chief of nephrology at UH Geauga Medical Center, described patients with glomerular disease as clinically distinct from the broader CKD population. She noted they are typically not diabetic, hypertensive, or older. Instead, patients tend to be in their 30s or 40s, with red flags such as microscopic hematuria, nephrotic-range proteinuria, and a family history of kidney failure that set them apart.

“We do CKD all day long, but when we get these patients…we can recognize [them], and actually, my staff can do, too,” Elfadawy said.

However, Nagaraju Sarabu, MD, MPH, a nephrologist and system quality leader for chronic conditions at MetroHealth, cautioned that the 2 diseases do not present with equal clarity, describing FSGS as a “mixed bag.” Specifically, primary FSGS often presents dramatically, but secondary FSGS is harder to spot, he said.

Sarabu also noted that secondary disease can remain undetected by both primary care physicians (PCPs) and nephrologists. IgAN can be similarly subtle, he added, with people occasionally being diagnosed with the disease when they come to donate a kidney.

Treatment also differs. Beyond the standard pillars of CKD therapy, primary glomerular disease often requires immunosuppression. Elfadawy urged peers to treat it more assertively than they would in general CKD.

“I always tell other nephrologists, just get out of the comfort zone,” she said. “If you are comfortable with one medication, just don’t stop there. Try to use more and more. With the CKD, we always like to watch and see.”

Improving Early Detection and Prioritizing High-Risk Patients

Because patients with glomerular disease are often young and otherwise healthy, they typically see a PCP long before they see a nephrologist, Elfadawy said. That places much of the burden of recognizing the disease on PCPs. Even nephrologists have changed how they view early warning signs, she added.

“We as nephrologists, 10 years ago, we thought microscopic hematuria [was] okay. This is not okay anymore,” Elfadawy said. “Proteinuria, any combination between hematuria and proteinuria—this is not okay. They have to see a nephrologist.”

Patrick Runnels, MD, MBA, chief medical officer for the UH Veale Healthcare Transformation Institute, distinguished between how a nephrology department prioritizes patients with rare glomerular disease vs how a health system as a whole does. Although nephrologists are likely to prioritize these patients when they reach specialty care, identifying and managing CKD within primary care settings remain challenging, he said, because of the condition’s broad scope and the growing demands placed on PCPs.

As health systems improve their ability to identify CKD, Runnels noted that they are increasingly focusing on determining which patients require greater attention, including those with more complex or severe disease.

“…we are only now catching up with the idea that we can’t just send everybody to specialists all the time, and that actually misses a lot of stuff anyway,” Runnels said. “I think that’s true of a lot of systems, and I’m guessing if you had any organization here, they’d say the same thing.”

Making the case to health system leadership requires reframing the burden, said Richard H. Cartabuke, MD, an internist in Executive Health at Cleveland Clinic. Health system leaders are more likely to invest in these patients once they see that a small group drives a large share of poor outcomes, he explained. Cartabuke compared it with his own patient portal inbox, where roughly 10% of patients generate 90% of his MyChart messages.

“It’s similar where you have a very small 5% to 10% of this population [that] actually is probably 25% or 30% of your poor outcomes when it comes to kidney disease,” he said.

Tyler Barnett, MHA, director of value improvement analytics at UH, stressed that quantifying that burden takes time. He described giving a nephrologist, a PCP, and data scientists dedicated time “just to think about the problem before racing to the solution” before proposing fixes.

Mahboob Rahman, MD, MS, chief of the Division of Nephrology and Hypertension at UH and professor of medicine at Case Western Reserve University School of Medicine, said building UH’s CKD infrastructure “took…years,” but that groundwork now positions the system to tackle glomerular disease.

“We are better prepared now than we would have been 5 years back because of what has already been done,” he said.

EHR-Based Alerts May Improve Early Detection, Referral

When Almaani asked whether their systems had protocols to catch these patients earlier, panelists said they did not. Rahman, in particular, cautioned that designing a protocol would be difficult because hematuria has many possible causes.

“[Patients with glomerulonephritis] are actually probably a small percentage of people who have hematuria,” he said. “I think it’ll need a lot of thought before you protocolize this concept.”

Sarabu described a recent case that showed how patients can be missed. A woman in her mid-20s had an elevated creatinine level for 4 to 5 years. A urinalysis showed marked proteinuria, and a later test measured her total urine protein at 7000 mg. She had no hematuria, and no nephrology referral was placed.

“So, sometimes glomerulonephritis can present with just proteinuria…especially if it is FSGS,” he said.

Rather than sophisticated artificial intelligence (AI), several panelists said they favored simple rules built into the EHR. Elfadawy proposed an alert that would suggest nephrology referral when proteinuria exceeds a set threshold.

“It doesn’t have to be complicated or sophisticated AI; it’s just like a simple thing,” she said. “If the proteinuria is higher than this threshold, this patient is better seen by [a] nephrologist because a lot of [the] time PCPs don’t know, is it bad enough to send for nephrology, or is it good enough?”

Runnels suggested adapting a registry approach that UH already uses for other conditions. Patients who meet set criteria would be pulled into a work list for a nephrology team, which can include pharmacists and advanced practice providers, to review.

“Without having to train AI, you could just create criteria and start to filter in a distinctive way,” he said. The team could then tell PCPs which tests to order and whether to refer patients to a nephrologist, he noted, the type of guidance PCPs welcome.

Panelists were more cautious about more advanced AI tools. Runnels said rare diseases pose a particular challenge for predictive modeling because “the data set is not big enough.” Cartabuke recalled a machine learning model his team built to guide hypertension management in primary care that clinicians rejected even though it was often accurate and later changed to show its reasoning.

“Physicians hated it because they said, ‘I don’t like that it tells me what I think should happen,’” Cartabuke said.

Barnett added that tools succeed when they narrow the number of patients clinicians need to review, “using the computer to help the human do what the human wanted to do in the first place, as opposed to…taking the human out.”

Streamlining Referrals and Reducing Barriers to Timely Care

At MetroHealth, Sarabu said, the nephrology referral order automatically pulls in the most recent glomerular filtration rate (GFR), urinalysis, and protein results. In addition, e-consults let PCPs ask questions without committing a patient to a visit. Even with a smooth referral, however, keeping young patients engaged remains a challenge, Elfadawy said.

“I get patients referred 3 and 4 times, and they don’t show up until they really, really have a problem,” she added. Because hematuria can come and go, delays cost patients, Elfadawy noted.

“If you don’t catch them right away and you give them 3 months wait time, you will lose them,” she said.

As a result, her clinic offers these patients appointments without a wait. Elfadawy also highlighted that many younger patients cycle between jobs and lose insurance coverage, which deters them from showing up.

Pharmacists Help Navigate Medication Access, Administrative Barriers

Pharmacists on the panel described their growing role in bridging these gaps. Diana Gabelman, PharmD, CSP, who recently became supervisor of a new team of navigating pharmacists embedded in MetroHealth primary care, said the role addresses transportation, cost, and medication access.

“The navigating pharmacist is going to be there to literally help navigate,” she said.

In addition, Brittany Passerell, PharmD, a specialty pharmacist at MetroHealth, outlined a process in which specialty prescriptions route through a pharmacist triage queue, prior authorization team, and financial assistance review before release.

“We kind of make sure the patient’s all polished before it even gets out the door,” she said.

That work is often undercut by limited distribution networks, panelists said. Julie Barnes, PharmD, an inpatient pharmacist at Cleveland Clinic, noted that for many nephrology specialty drugs, “it’s the company itself” that directs prescriptions to outside specialty pharmacies. Passerell highlighted a case in which a patient had never received a medication because the external pharmacy was unaware of a copay card she had already provided.

Administrative burden also shapes prescribing. Asked whether pharmacist support for Risk Evaluation and Mitigation Strategy (REMS) requirements influences drug choice, Sarabu answered, “Hands down.”

Barnes added that because REMS programs require the prescriber, patient, and dispensing organization to enroll, “if there’s another option that is not a REMS drug, we’re choosing that one first.”

Guidelines and Protocols Must Keep Pace With New Therapies

Panelists described the Kidney Disease: Improving Global Outcomes guidelines for IgAN and FSGS as a useful frame but too general to guide choices among newer agents.^1,2

Elfadawy described the guidelines as “very broad,” adding that they do not address how to layer immunosuppressive and supportive therapies. Sarabu attributed clinicians’ discomfort with the newer therapies to the pace of change relative to the unchanged disease frequency.

“The disease frequency hasn’t increased,” he said, noting that he may see a new IgAN case only once a year. “It’s been the same, but the knowledge has advanced so much, and the clinicians and implementation [are] lagging.”

Building on this, Almaani described an IgAN protocol developed at Cleveland Clinic that recommends drug classes rather than specific agents, which he said allows it to evolve with the evidence.

Barnes said narrowing choices also eases formulary and EHR build work.

“If it’s choose 1 of the 12 drugs, that’s a lot harder lift from the IT and the pharmacy end than to say, ‘Well, we’re going to choose maybe 1 of these 3,’” she said.

Drawing on UH’s work in heart failure, Runnels cautioned, however, that writing a protocol is the easy part.

“The devil isn’t in the protocol being adopted,” he said. “The adoption of the protocol means working through all the exceptions and all the real-world things that are a problem.”

Turning Early Identification Into Timely, Specialized Care

When Almaani asked what they would bring back from the discussion to their institutions within the next 18 months, panelists converged on practical first steps. Barnett proposed starting with a criteria-based patient list for review. Cartabuke wanted EHR-embedded flags on abnormal urinalyses, followed by next steps in testing, along with visibility into estimated GFR trajectory. Rahman suggested routing those flags to nephrology. Setting criteria for which findings should prompt a referral will take work, he said, but it is feasible.

Elfadawy emphasized that identification must be paired with routing patients to clinicians experienced in glomerular disease. Otherwise, a patient may wait months with a general nephrologist before being referred again, a gap UH is addressing by adding subspecialty options to its Epic nephrology referral, she said.

“Identifying patients [is] very important, but channel of referral is very important too,” she said. “So, I think putting these patients under the right channel will facilitate the care they get, instead of getting lost in the system.”

References

1. Kidney Disease: Improving Global Outcomes (KDIGO) IgAN and IgAV Work Group. KDIGO 2025 clinical practice guideline for the management of immunoglobulin A nephropathy (IgAN) and immunoglobulin A vasculitis (IgAV). Kidney Int. 2025;108(4S):S1-S71. doi:10.1016/j.kint.2025.04.004
2. Kidney Disease: Improving Global Outcomes (KDIGO) Glomerular Diseases Work Group. KDIGO 2021 clinical practice guideline for the management of glomerular diseases. Kidney Int. 2021;100(4S):S1-S276. doi:10.1016/j.kint.2021.05.021