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New registry aims to unlock secrets of rare leukemia

NCT ID NCT02560883

Knowledge-focused Sponsor: Ohio State University Comprehensive Cancer Center 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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 Jul 02, 2026 · Last updated Jul 02, 2026

Summary

This study creates a registry for people with hairy cell leukemia (HCL), a rare form of adult leukemia. Researchers will track disease course, treatments, infections, and patient-reported outcomes over time. The goal is to identify trends, improve care, and design future clinical trials. Adults with classic or variant HCL can join.

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 could help doctors identify the best treatments and uncover hidden complications, ultimately improving survival and quality of life for people with this rare leukemia.
What could go wrong
This is an observational registry, not a treatment trial. It collects data but does not test any new therapy, so direct patient benefits may take years to emerge.

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 5,000 people

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

Started

Jan 2013

Expected to finish

Dec 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

This study will be a multi-institutional, international project that will collate clinical information from patients with Hairy Cell Leukemia from participating institutions in the Hairy Cell Leukemia Foundation. Patients within the United States with HCL, who live in remote areas, without access to a HCLFCenter of Excellence, may voluntarily submit their name and contact information, through the Hairy Cell Leukemia Foundation website.

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: * Patients with classic hairy cell leukemia * Patients with the variant of hairy cell leukemia. Exclusion: * Children are excluded from the study, since Hairy Cell Leukemia wasn't described in children.

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Conditions

The condition(s) this trial relates to.

hairy cell leukemia hairy cell leukemia variant leukemia

As listed by the trial registrant

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

Leukemia, other

How to take part

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

  1. The places running it

    8 sites in 3 countries. 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

  • BC Cancer, Part of the Provincial Health Services Authority

    RECRUITING

    Vancouver, Britsh Columbia, V5Z 4E6, Canada

  • Cancer Care Manitoba

    RECRUITING

    Winnipeg, Manitoba, R3E 0V9, Canada

  • Mayo Clinic

    RECRUITING

    Rochester, Minnesota, 55905, United States

  • Mount Sinai Medical Center of Florida

    RECRUITING

    Miami Beach, Florida, 33140, United States

  • Ohio State University Comprehensive Cancer Center

    RECRUITING

    Columbus, Ohio, 43210, United States

  • Peter MacCallum Cancer Center

    RECRUITING

    Melbourne, Victoria, VIC 3000, Australia

  • University of Miami/Soffer Clinical Research Center

    RECRUITING

    Miami, Florida, 33136, United States

  • University of Rochester /Wilmot Cancer Institute

    RECRUITING

    Rochester, New York, 14642, United States

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