ClinicalTrials.gg
RecruitingNCT06664814Updated Oct 30, 2026

An Open-Label Phase 2 Study of N-Acetyl-D-Mannosamine (ManNAc) in Subjects With Podocyte Diseases

A Phase 2 interventional study of ManNAc in Focal Segmental Glomerulosclerosis, Minimal Change Disease and Membranous Nephropathy, sponsored by National Human Genome Research Institute (NHGRI). Recruiting at 1 site in United States. Open to participants aged 18 Years to 115 Years. Per ClinicalTrials.gov, last updated 2026-10-30.

Sponsored by National Human Genome Research Institute (NHGRI) · Phase 2, Interventional, and Treatment

Updated Oct 30, 2026Start date movedEligibility revisedGo to Updates ↓
Phase
Phase 2
Study type
Interventional
Enrollment
30
Allocation
Not applicable
Ages
18 Years to 115 Years
Sex
All
01

Study summary

Background:

Podocyte diseases are a group of kidney conditions that include focal segmental glomerulosclerosis (FSGS), minimal change disease (MCD), and membranous nephropathy (MN). In these conditions, specialized kidney cells called podocytes, which help prevent protein from leaking into the urine, are damaged. This can result in high levels of protein in the urine and, over time, worsening kidney function. In some people, the disease may progress to kidney failure requiring dialysis or a kidney transplant. Several treatments are currently available and can be beneficial, but they may cause significant side effects and may not work well for everyone. Therefore, there is a need for safer and more effective treatments for people with these types of kidney conditions.

Objective:

To test a study drug (ManNAc) in people with a podocyte disease, that includes Focal Segmental Glomerulosclerosis (FSGS), Minimal Change Disease (MCD), or Membranous Nephropathy (MN).

Eligibility:

People aged 18 years and older with a podocyte disease, that includes Focal Segmental Glomerulosclerosis (FSGS), Minimal Change Disease (MCD), or Membranous Nephropathy (MN).

Design:

Participants will have 5 to 6 clinic visits over 14 weeks. Two of the visits will require overnight stays for 2 or 3 nights.

ManNAc is a white powder that comes in a sachet. It is dissolved in water and taken twice a day by mouth. Participants will take their first dose at the clinic. They will learn how to store ManNAc and prepare each dose. They will record their doses in a diary. They will also write down any adverse effects or troubles they have using the drug at home.

During clinic visits, participants will have physical exams with blood and urine tests. They will complete questionnaires about their health, sleep habits, and fatigue symptoms.

During overnight visits, participants will also have 24-hour urine collection.

A study team member will call participants 1 week after the first dose to check on their health. Follow-up phone calls will then be every 2 weeks after each clinic visit.

Participants may meet with a dietitian to discuss nutrition while taking the ManNAc.

Participants may choose to have genetic tests.

Read the detailed description

Study Description:

Phase 2, open-label, single-arm, single-center study of ManNAc 2,000 mg oral (PO) twice daily (BID) for 12 weeks in 15 subjects with podocyte diseases to include focal segmental glomerulosclerosis (FSGS), minimal change disease (MCD), or membranous nephropathy (MN). The study will characterize the long-term safety, tolerability, pharmacokinetics, and efficacy of ManNAc for proteinuria reduction in subjects with podocyte diseases. We hypothesize that ManNAc will be safe and well-tolerated and will reduce proteinuria in subjects with podocyte diseases.

Objectives:

Primary Efficacy Objective:

-Determine the efficacy of ManNAc therapy in reducing proteinuria in subjects with podocyte diseases.

Primary Safety Objective:

-Assess the long-term safety and tolerability of orally administered ManNAc to subjects with podocyte diseases.

Secondary Objectives:

  • Evaluate the long-term pharmacokinetic characteristics of ManNAc 2,000 mg PO BID administered to subjects with eGFR >=30 ml/min/1.73m\^2.
  • Evaluate the percentage of subjects achieving partial or complete remission.

Exploratory Objectives:

  • Evaluate the impact of ManNAc on symptom burden and functional status using patient-reported outcomes measures (PROMs).
  • Evaluate the effect of ManNAc on clinical measures of renal function other than proteinuria.
  • Evaluate the change in proteinuria as assessed by 24-hr urine collection.
  • Assess variations in the clinical response to ManNAc therapy depending on whether glomerular hyposialylation is present or absent in pre-study renal biopsy samples.
  • Assess variations in the clinical response to ManNAc therapy based on the presence of genetic variants in podocyte-related genes, including APOL1 in subjects with FSGS.

Endpoints:

Primary Endpoint:

-Percentage reduction in proteinuria as assessed with urine protein/creatinine ratio (UPCR) from baseline through 12 weeks of ManNAc therapy.

Primary Safety Endpoint:

-Demonstrate safety and tolerability by assessing the frequency of adverse events (AEs) in subjects as obtained from in-person assessments, clinical laboratory tests, vital signs, electronic diaries, and physical examinations.

Secondary Endpoints:

  • To characterize plasma pharmacokinetics of ManNAc 2,000 mg PO BID in subjects with eGFR >=30 ml/min/1.73m\^2.
  • Proportion of patients meeting Partial Remission (PR), defined as proteinuria >0.3 g/g but \<3.5 g/g or a decrease in proteinuria by >=50% from the initial value and \<3.5 g/g.
  • Proportion of patients meeting Complete Remission (CR), defined as proteinuria \<0.3 g/g.

Exploratory Endpoints:

  • Change in PROMs as measured using the generic questionnaire Patient Reported Measurement Information System (PROMIS), from baseline to 12 weeks of ManNAc therapy.
  • Change in eGFR slope of a linear regression line from baseline through 12 weeks.
  • Proportion of patients with at least a 27% (geometric mean) reduction in urine albumin/creatinine ratio (UACR) from baseline values at end of 12 weeks of therapy.
  • Reduction in 24-hr urine protein excretion from baseline after completion of ManNAc therapy at 12 weeks.
  • Assess differences in endpoints based on the extent of glomerular hyposialylation in pre-study renal biopsy samples.
  • Assess differences in endpoints based on presence of genetic variants in podocyterelated genes, including APOL1 in subjects with FSGS.
02

Conditions studied

  • Focal Segmental Glomerulosclerosis
  • Minimal Change Disease
  • Membranous Nephropathy

Keywords

  • Sialic Acid
  • Proteinuria
  • ManNAc
  • Kidney Disease
  • FSGS
  • MCD
  • MN
03

In context

Glomerulosclerosis, Focal Segmental

105 studies on the registry are indexed under Glomerulosclerosis, Focal Segmental; 33 are open to participants now.

This study's planned enrollment of 30 is close to the median of 30 across 73 interventional studies indexed under Glomerulosclerosis, Focal Segmental.

Browse Glomerulosclerosis, Focal Segmental studies →

Lead sponsor

National Human Genome Research Institute (NHGRI) is the lead sponsor of 203 studies on the registry; 33 are open to participants now.

Counted across the registry records on this site, refreshed daily.

04

Who can participate

The criteria were revised on the registry on Oct 26, 2026. See what changed

Ages eligible
18 Years to 115 Years
Sexes eligible
All
Accepts healthy volunteers
No

Go through the criteria one by one — yes, no or not sure — and take the list to your doctor or the study team. Kept in this browser only.

Inclusion criteria

Individuals must meet all the following inclusion criteria to be eligible to participate in this study:

  1. Prior kidney demonstrating FSGS, MCD, or MN obtained within 10 years prior to the screening visit.
  2. Age >=18 years weighing more than 50 kg.
  3. If the patient is on any therapy, he/she should be on them for at least 3 months prior to study evaluation and should be on a stable dose for at least 4 weeks before start of trial, with no plans to alter the regimen during 12 weeks of study period, except to stabilize levels and/or for any safety concerns.
  4. Subjects will be allowed to continue with standard of care (SOC) non-immunosuppressant antiproteinuric agents to include RAAS inhibitors, mineralocorticoid antagonists (MRA), sodium-glucose co-transporter-2 inhibitors (SGLT2i), non-dihydropyridine calcium channel blockers (NDHP-CCBs), Sparsentan, and glucagon-like peptide-1 (GLP-1) receptor agonists, in addition to other SOC therapies such as diuretics, if they are able to maintain a stable dose throughout the trial. Subjects and their primary nephrologists will be encouraged to optimize their SOC treatments as much as possible prior to trial commencement. Subjects must be on a stable dose for at least 4 weeks before start of trial. Subjects should attempt to keep stable doses of both immunosuppressants and anti-proteinuric drugs throughout trial duration, to avoid confounding effects. Patients not receiving any of these SOC agents either due to allergy or intolerance will still be eligible.
  5. Subjects must have a spot random urine PCR of >=2 g/g on each of 3 measurements collected on at least 2 separate days during screening and baseline period plus a 24-hr urine protein collection of >=2 g/day. The rationale for using this degree of proteinuria is that proteinuria beyond this threshold value significantly increases the risk of progressive decline of renal functions in the absence of effective therapies to mitigate this risk. Conversely, this threshold value could also allow for the selection of a cohort of patients who are most likely to benefit from ManNAc therapy.
  6. Subjects with an estimated (eGFR) >=30 mL/min/1.73/m\^2 using the race-free CKD-EPI 2021 equation based on creatinine and cystatin-C. The rationale is that below this eGFR threshold, sialic acid, the key metabolite of ManNAc markedly accumulates and may potentially result in systemic toxicity. Prior pharmacokinetic studies have shown that renal elimination of sialic acid is primarily through glomerular filtration, and it is neither reabsorbed nor secreted in the renal tubules. Hence decline in eGFR below 30 mL/min/1.73m\^2 directly correlates with markedly rising blood sialic acid levels, in addition, these subjects may not benefit as much from ManNAc therapy as they have advanced disease pathology, which may be irreversible. Future studies with personalized precision ManNAc dosing may benefit the patient population with eGFR \<30 mL/min/1.73m\^2.
  7. Subjects of must be willing to use at least one effective form of throughout the trial period, unless they have had a permanent birth control procedure/intervention including but not limited to hysterectomy, tubal ligation and/or vasectomy. These may include the following: barrier methods (such as condoms), oral or depot injection (for example, Norplant or Depo-Provera) contraception medication, and/or intrauterine devices.
  8. Evidence of a personally signed and dated indicating that the patient has been informed of all pertinent aspects of the study and their willingness to comply with all aspects of the study protocol, including treatment plan, laboratory tests, baseline and followup visits and procedures that include completion of daily diaries to record symptoms and medication intake.

Exclusion criteria

EXCLUSION CRITERIA:

An individual who meets any of the following criteria will be excluded from participation in this study:

  1. Individuals who are unwilling or unable to provide .
  2. Individuals who, at screening, have unstable nephrotic syndrome based on review of records and clinical assessment by investigators will be excluded.

    The rationale for this criterion is that patients presenting with unstable nephrotic syndrome may need to be initiated on various medications including immunosuppressives as well as non- drugs which can significantly change the level of proteinuria. Additionally, fluid shifts due to diuretic use for treating edema can alter which could confound the pharmacokinetics and pharmacodynamics of the drug.

  3. Individuals who acutely require optimization of volume status with intravenous diuretics to control volume overload, as this may result in fluid shifts between the intravascular space and the remainder of extracellular fluid volume. This might alter drug pharmacokinetics and pharmacodynamics as mentioned above in # 2.
  4. Individuals with a psychiatric illness or neurological disease that in the judgement of the investigators would interfere with the ability to adhere with the requirements of this protocol. This includes, but is not limited to, uncontrolled/untreated psychotic depression, bipolar disorder, schizophrenia, substance abuse or dependence, antisocial personality disorder, panic disorder, or behavioral problems, which might interfere with effective communication.
  5. Vulnerable individuals, including those with impaired cognitive function or are incarcerated.
  6. Individuals whose renal show evidence of an additional pathology other than FSGS, MCD, and/or MN.
  7. Renal biopsy showing interstitial fibrosis and tubular atrophy (IFTA) >50% per biopsy report.
  8. Individuals with uncontrolled hypertension with blood pressures consistently >140/90 mmHg on 3 or more community clinic blood pressure measurements.
  9. Individuals with clinical evidence of any type of active infection including but not limited to , and/or or patients who are positive on screening test for HIV including antibody or viral load, HBV surface antigen and/or HCV antibody. If a patient is positive for HCV antibody, then an HCV viral load will be measured to identify subjects with active infection. Additional tests may include those to screen for active CMV, Infectious Mononucleosis (Epstein-Barr Virus), parvovirus B19 and/or COVID-19 infection as per investigator judgement.
  10. Individuals with evidence and/or documented history of progressive deterioration of liver functions, including the production of clotting factors, removal of toxic metabolic products, bile excretion for at least 6 months, routine hepatic laboratory indices including but not limited to (, ALT, or GGT) greater than 3 times the , and/or individuals with a documented history and/or diagnosis of chronic liver disease.
  11. Individuals with hypertriglyceridemia >500 mg/dL.
  12. Individuals with a documented history of (identified within the last 5 years and/or on active therapy at time of screening).
  13. Individuals with a documented history of Type I or Type II Diabetes Mellitus
  14. Individuals with a documented history of any cardiac, connective tissue, and/or hematologic diagnoses that, in the judgment of the investigators, may be associated with FSGS, MCD, and/or MN.
  15. Individuals who are currently taking, or who have taken within the last 6 months, medications known or suspected to cause drug-induced podocytopathies, including interferons, lithium, heroin, and anthracyclines, will be excluded at the discretion of the investigators.
  16. Individuals who are pregnant, will be breastfeeding or refuse anytime during the study.
  17. Individuals who have received treatment with another investigational drug, investigational device, or approved therapy for investigational use less than 60 days prior to planned ManNAc dosing.
  18. Individuals with to ManNAc.
  19. Individuals who have been treated with ManNAc, sialic acid, IVIG, and/or other supplements containing sialic acid (e.g., sialyllactose) less than 60 days prior to planned ManNAc dosing.
  20. Individuals who received a renal or any other solid organ and/or bone marrow/stem cell transplantation.
  21. Individuals who, in the judgment of the investigator, have a condition that places the subject at increased risk for AEs or have any other illness or clinical condition that might confound the results of the study or pose an additional risk in administering study drug to the subject.
  22. Patients who need systemic immunosuppressive or therapy for non-renal indication at any time throughout the trial.
  23. Any patient receiving B-cell depleting therapy, monoclonal antibody therapy, cyclophosphamide, and/or plasmapheresis within 6 months of screening.
  24. A documented history of active alcohol and/or substance abuse within the past 2 years.
  25. Any patient with rapidly progressing glomerulonephritis (RPGN) and/or crescentic glomerulonephritis on renal biopsy.
Terms in these criteria, in plain language(16)

Underlined terms in the criteria open these too. Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.

Biopsy and archival tissue

A biopsy takes a small piece of tissue to examine. “Archival tissue” is a sample already taken, for example at diagnosis, and kept by the hospital.

Whether a stored sample will do depends on when it was taken, how much there is and what the study needs. Ask whether the study accepts your stored sample or needs a new biopsy.

Immunosuppression

A weakened immune system. It can come from an illness, such as HIV or some blood cancers, or from medicines that turn the immune system down, for example after an organ transplant or for an autoimmune disease; steroids at higher doses count.

Read whether the line is about a condition or about medicines, and which medicines and doses it means.

Adjuvant and neoadjuvant

Neoadjuvant treatment is given before the main treatment (usually surgery), often to shrink a tumour. Adjuvant treatment is given after it, to lower the chance of the cancer coming back.

GFR and eGFR (kidney filtering)

GFR (glomerular filtration rate) is how much blood the kidneys filter each minute. It is usually estimated from a blood test — eGFR, by formulas such as CKD-EPI or MDRD — and some studies ask for it to be measured directly instead. Usually given in mL/min/1.73 m².

Check the method, the units and the minimum the study states. A value of 90 or above is in the normal-or-high range, but kidney damage can show in other tests too.

Reproductive potential

Able to have children. For women this usually means from the first period until menopause, unless permanently unable to through surgery; for men, unless permanently sterile. Read who the line is about — participants, women, men, or their partners.

Criteria about it usually ask for contraception during the study and for a time after it.

Contraception

Ways of preventing pregnancy. “Highly effective” methods fail less than 1% of the time a year when used correctly — for example an IUD or an implant.

Criteria usually say which methods count and how long to keep using them after the last dose, sometimes for male participants too. Some studies accept a partner’s vasectomy if it was confirmed successful and that person is the participant’s only sexual partner.

Informed consent

Before you join, the study team explains what taking part involves — its purpose, what happens, the risks and possible benefits — and answers your questions, so you can decide freely. Consent is usually recorded on a form (the informed consent form, ICF) signed by you or, where the law allows, by someone legally authorised to decide for you.

You can keep asking questions during the study, you are told of new information that matters, and you can choose to leave at any time.

Investigational drug or device

A drug or device being studied in a clinical trial.

It may be new, or already approved and being studied for another use, dose or form. Criteria often leave out people who took part in another study of one within a recent period, commonly 30 days or five half-lives.

HIV

The human immunodeficiency virus, which weakens the immune system.

Many studies now accept people whose HIV is controlled on treatment, judged by the viral load and the CD4 count. Check the limits this study sets.

Hepatitis B tests

Hepatitis B is a virus that infects the liver. These are separate tests: HBsAg positive usually means a current infection (a recent vaccination can briefly cause it too); total anti-HBc (HBcAb) positive means an infection now or in the past; HBV DNA measures how much virus is in the blood.

Some studies accept a past infection if HBV DNA is undetectable, sometimes with antiviral medicine during the study. Check what this study allows.

Hepatitis C tests

Hepatitis C is a virus that infects the liver. An HCV antibody test can stay positive after an infection has cleared (and is occasionally positive without one); an HCV RNA test shows whether the virus is there now.

After treatment, hepatitis C counts as cured when HCV RNA is still undetectable 12 weeks or more after the treatment ended. Studies often accept people cured this way.

ALT and AST (liver enzymes)

Two enzymes measured in a routine blood test of the liver. Higher levels can mean the liver is under strain or damaged. SGPT and SGOT are older names for ALT and AST.

Criteria usually give a limit as a multiple of the upper limit of normal (ULN), often higher when cancer has spread to the liver.

ULN (upper limit of normal)

The top of the normal range for a blood test, as set by the laboratory that runs it. Each lab prints its own range next to your result.

“≤ 2.5 × ULN” means the result can be up to two and a half times that top value.

Cancer (malignancy)

Malignancy means cancer. Criteria about another or earlier malignancy ask whether you have had a different cancer, usually within a set number of years.

Some are commonly allowed, such as treated skin cancers other than melanoma and early cancers removed completely — check the exceptions this study lists.

Hypersensitivity

An allergy, or another reaction of the immune system, to a substance. “Hypersensitivity to the study drug” means a known allergic reaction to it — not every side effect a medicine can have.

Corticosteroids (steroids)

Anti-inflammatory medicines such as prednisone, prednisolone and dexamethasone — not the anabolic steroids used for muscle.

Studies differ in what they allow: check which steroid medicines, routes (tablets, injections, creams, inhalers, eye drops) and doses this study accepts.

05

Study design

Phase
Phase 2
Primary purpose
Treatment
Allocation
Not applicable
Intervention model
Single group
Masking
None (open label)
Enrollment
30 participants (estimated)

Study arms

  • Experimental
    open label, single arm

    Drug: ManNAc

Interventions

  • DrugManNAc

    2 grams twice daily by mouth

06

What researchers measure

Primary outcomes

  1. Determine the efficacy of ManNAc therapy in reducing proteinuria (UPCR) in subjects with podocyte diseases.

    Time frame: 12-weeks.

  2. Assess the long-term safety and tolerability of orally administered ManNAc to subjects with podocyte diseases.

    Time frame: 12-weeks.

Secondary outcomes

  1. Evaluate the percent of subjects achieving partial or complete remission.

    Time frame: 12-weeks.

  2. Evaluate the long-term pharmacokinetic characteristics of ManNAc.

    Time frame: 12-weeks.

07

Study locations

1 of 1 sites recruiting
  • National Institutes of Health Clinical Center
    Bethesda, Maryland 20892, United States
    Recruiting
    • NIH Clinical Center Office of Patient Recruitment (OPR) · Contactccopr@nih.gov · 800-411-1222
08

References and documents

Publications

  • Galeano B, Klootwijk R, Manoli I, Sun M, Ciccone C, Darvish D, Starost MF, Zerfas PM, Hoffmann VJ, Hoogstraten-Miller S, Krasnewich DM, Gahl WA, Huizing M. Mutation in the key enzyme of sialic acid biosynthesis causes severe glomerular proteinuria and is rescued by N-acetylmannosamine. J Clin Invest. 2007 Jun;117(6):1585-94. doi: 10.1172/JCI30954. PubMed 17549255 ↗
  • Gelberg H, Healy L, Whiteley H, Miller LA, Vimr E. In vivo enzymatic removal of alpha 2-->6-linked sialic acid from the glomerular filtration barrier results in podocyte charge alteration and glomerular injury. Lab Invest. 1996 May;74(5):907-20. PubMed 8642786 ↗
  • Huizing M, Yardeni T, Fuentes F, Malicdan MCV, Leoyklang P, Volkov A, Dekel B, Brede E, Blake J, Powell A, Chatrathi H, Anikster Y, Carrillo N, Gahl WA, Kopp JB. Rationale and Design for a Phase 1 Study of N-Acetylmannosamine for Primary Glomerular Diseases. Kidney Int Rep. 2019 Jun 25;4(10):1454-1462. doi: 10.1016/j.ekir.2019.06.012. eCollection 2019 Oct. PubMed 31701055 ↗
  • Ito M, Sugihara K, Asaka T, Toyama T, Yoshihara T, Furuichi K, Wada T, Asano M. Glycoprotein hyposialylation gives rise to a nephrotic-like syndrome that is prevented by sialic acid administration in GNE V572L point-mutant mice. PLoS One. 2012;7(1):e29873. doi: 10.1371/journal.pone.0029873. Epub 2012 Jan 13. PubMed 22253810 ↗
  • Kakani S, Yardeni T, Poling J, Ciccone C, Niethamer T, Klootwijk ED, Manoli I, Darvish D, Hoogstraten-Miller S, Zerfas P, Tian E, Ten Hagen KG, Kopp JB, Gahl WA, Huizing M. The Gne M712T mouse as a model for human glomerulopathy. Am J Pathol. 2012 Apr;180(4):1431-40. doi: 10.1016/j.ajpath.2011.12.023. Epub 2012 Feb 7. PubMed 22322304 ↗
  • Niethamer TK, Yardeni T, Leoyklang P, Ciccone C, Astiz-Martinez A, Jacobs K, Dorward HM, Zerfas PM, Gahl WA, Huizing M. Oral monosaccharide therapies to reverse renal and muscle hyposialylation in a mouse model of GNE myopathy. Mol Genet Metab. 2012 Dec;107(4):748-55. doi: 10.1016/j.ymgme.2012.10.011. Epub 2012 Oct 18. PubMed 23122659 ↗
  • Pawluczyk IZ, Najafabadi MG, Brown JR, Bevington A, Topham PS. Sialic acid supplementation ameliorates puromycin aminonucleoside nephrosis in rats. Lab Invest. 2015 Sep;95(9):1019-28. doi: 10.1038/labinvest.2015.78. Epub 2015 Jun 29. PubMed 26121320 ↗
  • Troost JP, Trachtman H, Nachman PH, Kretzler M, Spino C, Komers R, Tuller S, Perumal K, Massengill SF, Kamil ES, Oh G, Selewski DT, Gipson P, Gipson DS. An Outcomes-Based Definition of Proteinuria Remission in Focal Segmental Glomerulosclerosis. Clin J Am Soc Nephrol. 2018 Mar 7;13(3):414-421. doi: 10.2215/CJN.04780517. Epub 2017 Nov 22. PubMed 29167190 ↗
  • Troost JP, Waldo A, Carlozzi NE, Murphy S, Modersitzki F, Trachtman H, Nachman PH, Reidy KJ, Selewski DT, Herreshoff EG, Srivastava T, Gibson KL, Derebail VK, Lin JJ, Hingorani S, Fornoni A, Fervenza FC, Sambandam K, Athavale AM, Kopp JB, Reich HN, Adler SG, Greenbaum LA, Dell KM, Appel G, Wang CS, Sedor J, Kaskel FJ, Lafayette RA, Atkinson MA, Lieske JC, Sethna CB, Kretzler M, Hladunewich MA, Lemley KV, Brown E, Meyers KE, Gadegbeku CA, Holzman LB, Jefferson JA, Tuttle KR, Singer P, Hogan MC, Cattran DC, Barisoni L, Gipson DS; Nephrotic Syndrome Study Network. The longitudinal relationship between patient-reported outcomes and clinical characteristics among patients with focal segmental glomerulosclerosis in the Nephrotic Syndrome Study Network. Clin Kidney J. 2019 Aug 5;13(4):597-606. doi: 10.1093/ckj/sfz092. eCollection 2020 Aug. PubMed 32905199 ↗
  • van der Willik EM, van Breda F, van Jaarsveld BC, van de Putte M, Jetten IW, Dekker FW, Meuleman Y, van Ittersum FJ, Terwee CB. Validity and reliability of the Patient-Reported Outcomes Measurement Information System (PROMIS(R)) using computerized adaptive testing in patients with advanced chronic kidney disease. Nephrol Dial Transplant. 2023 May 4;38(5):1158-1169. doi: 10.1093/ndt/gfac231. PubMed 35913734 ↗
  • Weinhold B, Sellmeier M, Schaper W, Blume L, Philippens B, Kats E, Bernard U, Galuska SP, Geyer H, Geyer R, Worthmann K, Schiffer M, Groos S, Gerardy-Schahn R, Munster-Kuhnel AK. Deficits in sialylation impair podocyte maturation. J Am Soc Nephrol. 2012 Aug;23(8):1319-28. doi: 10.1681/ASN.2011090947. Epub 2012 Jun 28. PubMed 22745475 ↗
  • Huizing M, Ganguli A, Bolanos J, Leoyklang P, Wilkins KJ, Zeng Y, Figg WD, Rossignol F, Malicdan MCV, Kopp JB, Gahl WA; NIH-ManNAc Study Team. Phase 1 Study of Oral N-Acetylmannosamine in Primary Podocytopathies. Kidney Int Rep. 2025 Dec 31;11(3):103758. doi: 10.1016/j.ekir.2025.103758. eCollection 2026 Mar. PubMed 41630898 ↗

Individual participant data

Plan to share: Undecided — pending

09

Updates

25 registry updates since Sep 25, 2026
Start date
Sep 29, 2026→Oct 27, 2026 (actual)
moved 25 times, Sep 25, 2026 – Oct 30, 2026
Eligibility
1 inclusion criterion edited
What changed in the criteria
Inclusion criteria
  • EditedEvidence of a personally signed and dated informed consent indicating that the patient has been informed of all pertinent aspects of the study and their willingness to comply with all aspects of the study and their willingness to comply with all aspects of the study protocol, including treatment plan, laboratory tests, baseline and follow-upfollowup visits and procedures that include completion of daily diaries to record symptoms and medication intake.
Oct 26, 2026
Show all 25 updates
  1. Oct 30, 2026
    Start date Nov 3, 2026→Oct 27, 2026 (now actual)
  2. Oct 29, 2026
    Start date Nov 2, 2026→Nov 3, 2026
    + 1 other change: verification date
  3. Oct 28, 2026
    Start date Nov 1, 2026→Nov 2, 2026
  4. Oct 27, 2026
    Start date Oct 29, 2026→Nov 1, 2026
  5. Oct 26, 2026
    Start date Oct 28, 2026→Oct 29, 2026
    Eligibility 1 inclusion criterion edited
    What changed in the criteria
    Inclusion criteria
    • EditedEvidence of a personally signed and dated informed consent indicating that the patient has been informed of all pertinent aspects of the study and their willingness to comply with all aspects of the study and their willingness to comply with all aspects of the study protocol, including treatment plan, laboratory tests, baseline and follow-upfollowup visits and procedures that include completion of daily diaries to record symptoms and medication intake.
  6. Oct 23, 2026
    Start date Oct 27, 2026→Oct 28, 2026
  7. Oct 22, 2026
    Start date Oct 26, 2026→Oct 27, 2026
  8. Oct 21, 2026
    Start date Oct 25, 2026→Oct 26, 2026
  9. Oct 20, 2026
    Start date Oct 22, 2026→Oct 25, 2026
  10. Oct 19, 2026
    Start date Oct 21, 2026→Oct 22, 2026
  11. Oct 16, 2026
    Start date Oct 20, 2026→Oct 21, 2026
  12. Oct 15, 2026
    Start date Oct 19, 2026→Oct 20, 2026
  13. Oct 14, 2026
    Start date Oct 18, 2026→Oct 19, 2026
  14. Oct 13, 2026
    Start date Oct 14, 2026→Oct 18, 2026
  15. Oct 9, 2026
    Start date Oct 13, 2026→Oct 14, 2026
  16. Oct 8, 2026
    Start date Oct 12, 2026→Oct 13, 2026
  17. Oct 7, 2026
    Start date Oct 11, 2026→Oct 12, 2026
  18. Oct 6, 2026
    Start date Oct 8, 2026→Oct 11, 2026
  19. Oct 5, 2026
    Start date Oct 7, 2026→Oct 8, 2026
  20. Oct 2, 2026
    Start date Oct 6, 2026→Oct 7, 2026
  21. Oct 1, 2026
    Start date Oct 5, 2026→Oct 6, 2026
    + 3 other changes: verification date, conditions and index terms
  22. Sep 30, 2026
    Start date Oct 4, 2026→Oct 5, 2026
  23. Sep 29, 2026
    Start date Oct 1, 2026→Oct 4, 2026
  24. Sep 28, 2026
    Start date Sep 30, 2026→Oct 1, 2026
  25. Sep 25, 2026
    Start date Sep 29, 2026→Sep 30, 2026

From the registry record's own update history. This site started tracking changes on Sep 25, 2026; for anything earlier, see the record history on ClinicalTrials.gov ↗

10

Registry details

Key details

Study ID
NCT06664814
Responsible party
Sponsor
First posted
Oct 30, 2024
Start date
Oct 27, 2026
Primary completion
Nov 11, 2030 (estimated)
Completion
Dec 1, 2030 (estimated)
Last update
Oct 30, 2026

Study contacts

Marjan Huizing, Ph.D.
Contact
KidneyManNAc@nih.gov
(240) 893-4742
William A Gahl, M.D.
Contact
gahlw@mail.nih.gov
(301) 402-2739
William A Gahl, M.D.
principal investigator · National Human Genome Research Institute (NHGRI)

Oversight

FDA-regulated drug
Yes
FDA-regulated device
No
View the source record on ClinicalTrials.gov ↗

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Studies of the drug tested here: N-acetylmannosamine

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