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Can blood and urine markers reveal how rare kidney diseases progress?

NCT ID NCT02780297

Knowledge-focused Sponsor: Mayo Clinic Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now This study
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Aug 07, 2026 · Last updated Aug 07, 2026

Summary

This study follows people with rare inherited forms of kidney stones and chronic kidney disease, such as primary hyperoxaluria, cystinuria, and Dent disease, to learn how these conditions develop over time. Researchers will measure markers of inflammation in blood and urine and track kidney function over five years. By comparing different disorders, they hope to better understand the mechanisms that lead to kidney damage.

What this could mean

Our plain-language read of the trial. This is informational only, not medical advice or a prediction.

What this could lead to
This research could uncover biological markers that help predict how rare kidney stone diseases progress, potentially guiding future treatments and monitoring strategies.
What could go wrong
This is an observational study, so it won't test any new treatment. The findings may not directly change care, and the small number of participants with each rare condition may limit how broadly the results apply.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

About 220 people

The number the study aims to enrol. It can still change while the study runs.

Start date

May 2016

Expected to finish

Jul 2028

An estimate. End dates often move.

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

Individuals with Primary Hyperoxaluria, Dent Disease, Cystinuria and APRT Deficiency, Lowe syndrome, Dent Disease Carriers and Enteric Hyperoxaluria

Ages

Children (under 18), adults (18 to 64) and older adults (65 and over)

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

Inclusion Criteria: 1. Diagnosis of primary hyperoxaluria 2. Diagnosis of enteric hyperoxaluria 3. Diagnosis of Dent Disease 4. Diagnosis of Cystinuria 5. Diagnosis of adenine phosphoribosyltransferase deficiency (APRTd) 6. Diagnosis of Lowe Syndrome 7. Diagnosis of Dent Disease Carrier Exclusion Criteria: 1. Prior renal failure 2. History of liver and/or kidney transplant.

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Conditions

The condition(s) this trial relates to.

adenine phosphoribosyltransferase deficiency cystinuria Dent disease Hyperoxaluria oculocerebrorenal syndrome primary hyperoxaluria

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Adenine phosphoribosyltransferase deficiency Cystinuria Dent disease Hyperoxaluria Lowe syndrome

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The study's own enquiry address

    This study publishes an address for enquiries. See it below .

  2. The places running it

    11 sites in 4 countries. The list below names each one and where it is.

  3. The official record

    ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.

    Open the record ↗

  4. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

Contacts and locations

Locations

  • Children's Hospital of Philadelphia

    NOT_YET_RECRUITING

    Philadelphia, Pennsylvania, 19104, United States

  • Children's Hospital, Harvard Medical School

    NOT_YET_RECRUITING

    Boston, Massachusetts, 02115, United States

  • Children's Memorial Hospital

    NOT_YET_RECRUITING

    Chicago, Illinois, 60614, United States

  • Cincinnati Children's Hosptial Medical Center

    NOT_YET_RECRUITING

    Cincinnati, Ohio, 45229, United States

  • Hosptial of Sick Children

    NOT_YET_RECRUITING

    Toronto, Ontario, M5G 1X8, Canada

  • Landspitali Universtiy Hospital

    NOT_YET_RECRUITING

    Reykjavik, Iceland

  • Mayo Clinic Hyperoxaluria Center

    RECRUITING

    Rochester, Minnesota, 55905, United States

    Contact Email: •••••@•••••

    Contact Email: •••••@•••••

  • Mayo Clinic Jacksonville

    NOT_YET_RECRUITING

    Jacksonville, Florida, 32224, United States

  • New York University

    NOT_YET_RECRUITING

    New York, New York, 10010, United States

  • Shaare Zedek Medica Center

    NOT_YET_RECRUITING

    Jerusalem, Israel

  • University of Alabama @ Birmingham

    NOT_YET_RECRUITING

    Birmingham, Alabama, 35294, United States

More trials for these conditions

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