An observational study in Polycystic Kidney Disease, sponsored by The Rogosin Institute. Recruiting at 1 site in United States. Open to participants aged 18 Years and older. Per ClinicalTrials.gov, last updated 2025-11-12.
Sponsored by The Rogosin Institute · Observational
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Among 32 studies in Polycystic Kidney Diseases with a site in United States — 9 open to participants now, 9 under way, 1 of them phase 3. Polycystic Kidney Diseases · United States.
Among the 32 studies in Polycystic Kidney Diseases with a site in United States, this one is the 3rd largest by planned enrollment of the 10 observational ones that give a count, is the only one that started in 2002, is one of 10 observational ones, and was the 7th registered.
59 studies on the registry are indexed under Polycystic Kidney Diseases; 12 are open to participants now.
Browse Polycystic Kidney Diseases studies →9 of the 32 studies in Polycystic Kidney Diseases with a site in United States are open now. Recruiting first, the newest first:
Richard Fatica · Sites in United States
Ages 18+
Fetal Care Center, PLLC · Sites in United States
Women only
Ohio State University · Sites in United States
Ages 18–65
Otsuka Pharmaceutical Development & Commercialization, Inc. · Sites in United States, Belgium, Germany and 3 more countries
Ages 28 days–18 yrs
PKD Foundation · Sites in United States
A study can be open while its sites in United States have not opened yet or have stopped. Only those recruiting at a site in United States →
Of the 11 Polycystic Kidney Diseases studies recruiting now, 6 (55%) set no upper age limit and 5 (45%) stop at 75 or younger; 5 take children under 18; 1 takes healthy volunteers.
This study: 18 Years and older · all sexes · no healthy volunteers.
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32 studies; the count open now beside each. This study's row is marked.
A study in two phases is counted once above. Listed by phase, each with its combined phases: Phase 1 3 · Phase 2 11 · Phase 3 4
First in 2002; this study’s year is marked. 1 started in 2002.
By drug class, each counting the studies that test any of its medicines:
This study's planned enrollment of 1,000 is above the median of 225 across 20 observational studies indexed under Polycystic Kidney Diseases.
Median enrollment 25 across the 21 interventional studies, 300 across the 10 observational. Of the 21 that completed or were terminated, 10 (48%) have results posted.
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8 of 32 have an industry lead sponsor. The 10 most frequent:
The Rogosin Institute is the lead sponsor of 24 studies on the registry; 3 are open to participants now.
The Rogosin Institute has 2 studies filed under Polycystic Kidney Diseases — fewer than ten, so there is no comparison to draw.
2 of the studies in Polycystic Kidney Diseases with a site in United States that are under way reach primary completion within a year, 0 of them phase 3. Phase 3 first, then by date:
| Study | Primary completion |
|---|---|
| NCT06325644Ohio State UniversityWell-Formulated Ketogenic Diet Polycystic Kidney Disease | 2026-12-01 |
| NCT07454174Richard FaticaMetabolic Impacts of Ren-Nu: A Dietary Program for Polycystic Kidney Disease | 2027-02 |
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Among the 32 studies in Polycystic Kidney Diseases with a site in United States, from their registry updates:
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Autosomal dominant polycystic kidney disease (PKD) is the most common inherited kidney disease, affecting more than 400,000 people in the U.S. and 5 million people worldwide. PKD is the 4th most common cause of kidney failure requiring dialysis and/or transplantation. Over half of all PKD patients develop kidney failure by age 60 years, although age of onset of kidney disease varies widely, even among members of the same family.
Despite the fact this is a relatively common problem, relatively few patients have been studied for a sufficient period of time to fully understand how patients are affected over the course of their lifetime. The reason for creating this repository is to collect information about PKD so that the investigators may fully understand its complications, including high blood pressure, heart attack, and stroke. This information may also aid in the development of improved treatment strategies.
Visit #1:
Follow-up Study Visits:
- Patients will return to the outpatient facility for detailed follow-up examinations every other year after Visit 1.
All patients enrolled in this study will have the diagnosis of autosomal dominant kidney disease. The diagnostic criteria for at-risk individuals (i.e., with a first degree family member with ADPKD) includes the presence of at least two(unilateral or bilateral) renal cysts, and two cysts in each kidney are considered sufficient for diagnosis in aged 15 to 29 years and in 30 to 59 years, respectively. In families of unknown genotype, the presence of three or more (unilateral or bilateral) renal cysts is sufficient for establishing the diagnosis in individuals aged 15 to 39 years, two or more cysts in each kidney is sufficient for individuals aged 40-59 years and four or more cysts in each kidney is required in individuals ≥60 years of age.
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Exclusion Criteria:
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.
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.
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.
Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
Polycystic kidney disdease data repository
Polycystic kidney disease data repository
Time frame: 30 years
The record gives a start of Nov 2002, a primary completion of Dec 2030 and a completion of Dec 2030. It does not say whether these dates are actual or estimated.
How these figures are worked out, and which studies are left out of them.
Eligibility is decided by the study team. Share this record with your doctor or contact the team directly.
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The Rogosin Institute