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New registry aims to speed up PKD research

NCT ID NCT01873235

Knowledge-focused Sponsor: University of Maryland, Baltimore 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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 Jun 26, 2026 · Last updated Jun 26, 2026

Summary

This study is creating a registry and biobank of 350 adults with autosomal dominant polycystic kidney disease (ADPKD) in the Mid-Atlantic region. Participants will provide medical information, have kidney volume measured by MRI, and donate blood, urine, and DNA samples. The goal is to build a resource that helps researchers design and conduct future clinical trials to slow or prevent disease progression.

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
If successful, this registry will provide a valuable resource for researchers to design future studies and trials for polycystic kidney disease.
What could go wrong
This is an observational study, not a treatment trial. It builds infrastructure for future research, so it does not directly test any new therapy.

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 350 people

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

Started

Mar 2013

Expected to finish

Jun 2030

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

Adults with diagnosed Polycystic Kidney Disease

Ages

18 years and older

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: * Age 18 and older * ADPKD confirmed by genetic testing or ultrasound criteria using modified Ravine criteria: with family history:several cysts per kidney (3 by sonography, 5 if by computerized tomography or MRI)without family history: 10 cysts (by any radiologic method) per kidney and exclusion of other cystic kidney diseases * Ability to provide written informed consent prior to initiation of any study procedures and the ability in the opinion of the investigator to comply with all requirements of the study * Glomerular Filtration Rate (GFR) greater than 15ml/min/1.73m2 Exclusion Criteria: * End Stage Renal Disease or presently on dialysis or a prior kidney transplant --Pregnant, lactating, or intention to get pregnant in next 6 weeks * Another systemic disease such as cancer or lupus * Life expectancy less than 2 years * Current participation in a drug treatment trial * Non English speaking * Uncontrolled diabetes A1C 7.0 or more within 6 months of study visit; and/or on more than one oral hypoglycemic agent * Diabetic nephropathy

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Conditions

The condition(s) this trial relates to.

autosomal dominant polycystic kidney disease polycystic kidney disease

As listed by the trial registrant

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

Polycystic kidney disease

How to take part

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

  1. The places running it

    1 site. The list below names each one and where it is.

  2. 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 ↗

  3. 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

  • University of Maryland School of Medicine General Clinical Research Center

    RECRUITING

    Baltimore, Maryland, 21201, United States

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