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New registry aims to unlock secrets of rare blood disorder

NCT ID NCT05791708

Knowledge-focused Sponsor: RECORDATI GROUP Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now
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 This study
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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 27, 2026 · Last updated Jun 27, 2026

Summary

This study is a registry that collects information from about 429 adults with cold agglutinin disease (CAD) or cold agglutinin syndrome (CAS), a rare condition where the immune system attacks red blood cells in cold temperatures. Researchers will track symptoms, treatments, complications, and quality of life over time to better understand the disease and how it is managed in real-world settings. A smaller group of patients taking the drug sutimlimab will also be followed closely.

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 provide a clearer picture of how cold agglutinin disease progresses and how treatments are used in everyday practice.
What could go wrong
This is an observational study, not a treatment trial, so it won't directly test a new therapy. Results may be limited by how consistently data is collected across different sites.

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

429 people

The number who actually took part.

Started

Dec 2019

Expected to finish

Nov 2028

An estimate. End dates often move.

Lead sponsor

A company

The lead sponsor is a pharmaceutical, biotech, or medical-device company.

Who can take part

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

Who is studied

All patients with CAD or CAS will be eligible, regardless of the type of CAD or CAS-specific therapy they are receiving. In addition, the Cadence registry will include a sutimlimab cohort study whose objective is to assess the safety and the effectiveness of sutimlimab in patients with CAD in a real-world setting.

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: 1. Patient aged ≥18 years 2. Patient able to understand the purpose of the study and who (or whose legally authorized representative) provided signed and dated informed consent and authorization to use protected health information in accordance with national and local subject privacy regulations 3. Patient with a diagnosis of CAD or CAS as per Investigator judgment based on the diagnosis criteria listed in study protocol Exclusion Criteria: 1. Patient with mixed warm and cold autoimmune hemolytic anemia, or warm autoimmune hemolytic anemia 2. Patient actively participating in a CAD or CAS interventional clinical trial. After a patient completes participation in said trial, he/she may be eligible for enrollment in this registry.

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Conditions

The condition(s) this trial relates to.

autoimmune hemolytic anemia cold agglutinin disease

As listed by the trial registrant

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

Cold agglutinin disease (CAD) Cold agglutinin syndrome (CAS)

Contacts and locations

Locations

  • Brody School of Medicine at East Carolina University Site Number : 1203

    Greenville, North Carolina, 27834, United States

  • Center for Blood Disorders Site Number : 1214

    New York, New York, 10021, United States

  • Cleveland Clinic Foundation Site Number : 1207

    Cleveland, Ohio, 44195, United States

  • Hematology Oncology Associates, PC Site Number : 1211

    Medford, Oregon, 97504, United States

  • Henry Ford Hospital Site Number : 1232

    Detroit, Michigan, 48202, United States

  • Investigational Site Number : 2203

    Fukushima, Fukushima, 960-1295, Japan

  • Investigational Site Number : 2204

    Himeji-shi, Hyōgo, 670-0063, Japan

  • Investigational Site Number : 3101

    Salzburg, 5020, Austria

  • Investigational Site Number : 3102

    Vienna, 1090, Austria

  • Investigational Site Number : 3201

    Créteil, 94010, France

  • Investigational Site Number : 3202

    Quimper, 2900, France

  • Investigational Site Number : 3203

    Pessac, 33600, France

  • Investigational Site Number : 3204

    Cesson-Sévigné, 35510, France

  • Investigational Site Number : 3205

    Saint-Priest-en-Jarez, 42270, France

  • Investigational Site Number : 3206

    Corbeil-Essonnes, 91100, France

  • Investigational Site Number : 3211

    Chalon-sur-Saône, 71100, France

  • Investigational Site Number : 3213

    Pau, 64000, France

  • Investigational Site Number : 3214

    Angers, 49933, France

  • Investigational Site Number : 3216

    Poitiers, 86021, France

  • Investigational Site Number : 3217

    Paris, 75013, France

  • Investigational Site Number : 3218

    Toulouse, 31059, France

  • Investigational Site Number : 3219

    Dijon, 21079, France

  • Investigational Site Number : 3220

    Rennes, 35033, France

  • Investigational Site Number : 3221

    Epagny-Metz-Tessy, 74370, France

  • Investigational Site Number : 3222

    Amiens, 80054, France

  • Investigational Site Number : 3301

    Essen, 45147, Germany

  • Investigational Site Number : 3302

    Landshut, 84036, Germany

  • Investigational Site Number : 3306

    Hanover, 30161, Germany

  • Investigational Site Number : 3402

    Reggio Calabria, 89133, Italy

  • Investigational Site Number : 3403

    Novara, 28100, Italy

  • Investigational Site Number : 3404

    Roma, 00161, Italy

  • Investigational Site Number : 3405

    Terni, 05100, Italy

  • Investigational Site Number : 3410

    Campobasso, 86100, Italy

  • Investigational Site Number : 3411

    Palermo, 90146, Italy

  • Investigational Site Number : 3412

    Ravenna, 48121, Italy

  • Investigational Site Number : 3413

    Brescia, Lombardy, 25123, Italy

  • Investigational Site Number : 3415

    Pavia, 27100, Italy

  • Investigational Site Number : 3601

    Newcastle upon Tyne, North Tyneside, NE29 8NH, United Kingdom

  • Investigational Site Number : 3602

    Salford, Manchester, M6 8HD, United Kingdom

  • Investigational Site Number : 3603

    Truro, Cornwall, TR13LJ, United Kingdom

  • Investigational Site Number : 3605

    London, London, City of, NW1 2PG, United Kingdom

  • Investigational Site Number : 3606

    Taunton, Somerset, TA1 5DA, United Kingdom

  • Investigational Site Number : 3607

    Liverpool, L7 8XP, United Kingdom

  • Investigational Site Number : 3608

    Gillingham, Kent, ME75NY, United Kingdom

  • Investigational Site Number : 3611

    Oxford, Oxfordshire, OX3 7LE, United Kingdom

  • Investigational Site Number : 3612

    Leeds, LS9 7TF, United Kingdom

  • Investigational Site Number : 3613

    Middlesbrough, North Yorkshire, TS4 3BW, United Kingdom

  • Investigational Site Number : 3617

    Carlisle, Cumbria, CA2 7HY, United Kingdom

  • Investigational Site Number : 3618

    Birmingham, B15 2GW, United Kingdom

  • Investigational Site Number : 3620

    Harrow, HA1 3UJ, United Kingdom

  • Investigational Site Number : 3621

    London, E1 2ES, United Kingdom

  • Investigational Site Number : 3623

    Airdrie, North Lanarkshire, ML60JS, United Kingdom

  • Investigational Site Number : 3701

    Barcelona, Barcelona [Barcelona], 8036, Spain

  • Investigational Site Number : 3712

    Madrid, 28034, Spain

  • MedStar Georgetown University Hospital / Lombardi Comprehensive Cancer Center Site Number : 1208

    Washington D.C., District of Columbia, 20007, United States

  • Mission Hope Medical Oncology Site Number : 1241

    Santa Maria, California, 93454, United States

  • Northwell Health-Monter Cancer Center-North Shore University Hospital and Steven and Alexandra Cohen Children's Medical Center of New York (Schneider Children's Hospital)-North Shore Long Island Jewis Site Number : 1231

    Lake Success, New York, 11042, United States

  • Orchard Heathcare Research Inc. Site Number : 1202

    Skokie, Illinois, 60077, United States

  • Piedmont Cancer Institute, P.C Site Number : 1226

    Atlanta, Georgia, 30290, United States

  • Reliant Medical Group Site Number : 1205

    Worcester, Massachusetts, 01608, United States

  • SLO Oncology and Hematology Site Number : 1235

    San Luis Obispo, California, 93401, United States

  • SUNY Upstate Medical University Site Number : 1221

    Syracuse, New York, 13210, United States

  • Siouxland Regional Cancer Center dba June E. Nylen Cancer Center Site Number : 1220

    Sioux City, Iowa, 51101, United States

  • The Ohio State University Site Number : 1236

    Columbus, Ohio, 43210, United States

  • UT Medical Center Cancer Institute Site Number : 1237

    Knoxville, Tennessee, 37920, United States

  • University of Alabama at Birmingham Site Number : 1230

    Birmingham, Alabama, 35205, United States

  • University of Pittsburgh Medical Center-UPMC Hillman Cancer Center Site Number : 1210

    Pittsburgh, Pennsylvania, 15232, United States

  • University of Washingtion Seattle Cancer Care Alliance Site Number : 1238

    Seattle, Washington, 98109, United States

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