Recordati Rare Diseases

Recordati Rare Diseases works on 7 rare diseases tracked on Trial Friend, including Acromegaly, Cold Agglutinin Disease, Cushing Disease and 4 more, with 5 recruiting clinical trials and 9 FDA-approved rare disease drugs.

Recordati is an Italian pharmaceutical company with a dedicated rare disease division. Key products include Enjaymo (sutimlimab) for cold agglutinin disease (acquired from Sanofi in 2024 for $825 million), Signifor LAR (pasireotide) for acromegaly, Carbaglu (carglumic acid) for urea cycle disorders, and Cystadane (betaine) for homocystinuria.

Type
Diversified Pharma
Ticker
REC
Headquarters
Milan, Italy
Founded
1926
5
Active Rare Disease Trials
9
Approved Rare Disease Drugs
7
Rare Diseases in Portfolio
100
Years Active

Focus areas at Recordati Rare Diseases

Within its broader pharmaceutical portfolio, Recordati Rare Diseases has active clinical trial programs and drug development efforts across 7 rare diseases, including Acromegaly, Cold Agglutinin Disease, Cushing Disease, Homocystinuria, Methylmalonic Acidemia, and 2 additional rare conditions. These programs may span orphan drug designation, novel therapeutic mechanisms, and precision medicine approaches targeting the underlying causes of each disease.

The clinical trials section below shows all active and recruiting studies sponsored by Recordati Rare Diseases, sourced live from ClinicalTrials.gov. Each trial includes its current recruitment status, study phase (Phase 1 through Phase 4), conditions under investigation, and the number of active trial sites. The FDA-approved drugs section lists treatments that have received U.S. Food and Drug Administration approval, with brand names, generic names, approval dates, and matched rare disease indications from the openFDA database.

Recordati Rare Diseases is headquartered in Milan, Italy, founded in 1926, publicly traded under the ticker symbol REC. The company maintains a dedicated rare disease division alongside its broader therapeutic portfolio, working to bring innovative treatments to patients with conditions that have historically had limited or no treatment options.

Recordati Rare Diseases Drug Pipeline

Recordati Rare Diseases has 5 active clinical trials across 3 development stages, with 5 currently recruiting participants. Clinical trials advance through phases: Phase 1 tests safety in a small group, Phase 2 evaluates effectiveness and side effects, Phase 3 confirms benefit in a larger population, and Phase 4 monitors long-term safety after FDA approval.

Note: This pipeline includes all of Recordati Rare Diseases's active interventional trials, not only those targeting rare diseases. We show the full pipeline because a company's broader research activity, therapeutic expertise, and development infrastructure directly shape its ability to advance rare disease programs. A strong overall pipeline often signals deeper clinical operations, faster enrollment capabilities, and greater commitment to bringing new treatments to patients.

Understand Recordati Rare Diseases's pipeline
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1
Early Phase / Phase 11 trial
Non-Hodgkin Lymphoma+1 more
Recruiting
1
Phase 21 trial
Mild Autonomous Cortisol Secretion+1 more
Recruiting
3
Other3 trials
Recruiting
Recruiting

Recordati Rare Diseases Clinical Trials (5)

Active and recruiting clinical trials sponsored by Recordati Rare Diseases, sourced live from ClinicalTrials.gov. Each trial card shows the study phase, current recruitment status, conditions under investigation, study locations, eligibility criteria, and a direct link to the full ClinicalTrials.gov record. You can also download a one-page PDF summary to share with your doctor.

Note: Recruitment statuses on ClinicalTrials.gov may not immediately reflect recent FDA decisions, sponsor announcements, or enrollment changes. Always confirm a trial's current status directly with the study coordinator.

Ask about Recordati Rare Diseases's trials
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RECRUITINGPHASE1Updated a few months agoNCT06447376

Study of Cytokine Release Syndrome Prophylaxis and Treatment With Siltuximab Prior to Epcoritamab

Intervention: Siltuximab, Epcoritamab, Gemcitabine and oxaliplatin

Non-Hodgkin LymphomaCytokine Release Syndrome

The goal of this clinical trial is to is to determine the safety, feasibility and efficacy of siltuximab prophylaxis of cytokine release syndrome and neurotoxicity occurring after epcoritamab subcutaneous administration for participants with large b-cell lymphoma (DLBCL) or follicular lymphoma (FL). Participants will receive siltuximab, prior to the injection of epcoritamab. Epcoritamab is administered in 28 day cycles for one year. After this injection, the physician will continue to watch participants for side effects and follow the condition for a minimum of 60 days.

Ages 18 Years - 65 Years1 location
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ACTIVE NOT RECRUITINGUpdated a few months agoNCT05791708

Cold Agglutinin Disease Real World Evidence Registry

Intervention: Sutimlimab

Cold Agglutinin Disease (CAD)Cold Agglutinin Syndrome (CAS)

This is a multinational, multi-center, observational, prospective, longitudinal disease registry designed to collect data on participants with cold agglutinin disease (CAD) or cold agglutinin syndrome (CAS). Among them, a minimum of 30 patients with CAD treated with sutimlimab are expected to take part in the sutimlimab cohort study. Patients with CAD who have been enrolled in previous sutimlimab clinical trials (e.g., BIVV009-01/LTS16214 \[NCT02502903,CAD patients\], BIVV009-03/EFC16215 \[NCT03347396\], and BIVV009-04/EFC16216 \[NCT03347422\]) and who either completed or discontinued the corresponding clinical trial are eligible to participate in the registry.

Ages 18 Years+68 locations
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RECRUITINGPHASE2No updates in a whileNCT07104812

Impact of 1 mg Osilodrostat Therapy on Mild Autonomous Cortisol Secretion (MACS)

Intervention: Osilodrostat 1 MG

Mild Autonomous Cortisol SecretionAutonomous Cortisol Secretion (ACS)

The purpose of this study is to evaluate the safety and tolerability of 1 mg osilodrostat therapy in patients with mild autonomous cortisol secretion (MACS), and to determine the impact on 24h urine steroid metabolome and circadian cortisol/cortisone concentrations

Ages 18 Years+1 location
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RECRUITINGHasn't posted an update in over a yearNCT05040178

An Observational Study of Carbaglu® for the Treatment of MMA and PA in Adults and Pediatrics

Intervention: Carglumic Acid

To obtain short-term and long-term clinical safety information, in pediatric and adult patients with PA and MMA treated with Carbaglu®.

Ages not specified5 locations
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RECRUITINGHasn't posted an update in over a yearNCT04176523

Understanding the Long-Term Management of Organic Acidemia Patients With CARBAGLU®: A Mixed Methods Approach

Intervention: Carglumic Acid

Methylmalonic AcidemiaPropionic Acidemia

This is a prospective mixed-design study focused on the long-term management of propionic aciduria (PA) and methylmalonic aciduria (MMA) with N-carbamylglutamate (NCG) maintenance therapy. Treatment characteristics, clinical outcomes, and healthcare utilization data of patients diagnosed PA or MMA treated \>6 months therapy with NCG are collected at baseline, 12 months, 18 months, 36 months and 54 months. Qualitative interviews with adult patients and caregivers are conducted \>6 months after study enrollment to gain a better understanding of the disease burden and the treatment burden of patients and their families.

Ages 6 Months - 99 Years32 locations
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Recordati Rare Diseases FDA-Approved Drugs (9)

Medications developed or marketed by Recordati Rare Diseases that have received U.S. Food and Drug Administration approval. Drug data is sourced from the openFDA database and includes brand names, generic names, approval dates, and matched rare disease indications. Where a drug treats a condition covered by Trial Friend, the disease name links directly to that disease page.

Drug NameBrand NameRare DiseasesApproval Date
CARGLUMIC ACID
Carbamoyl Phosphate Synthetase 1 Activator [EPC]
Carbaglu
oral
Mar 18, 2010
BETAINE
Methylating Agent [EPC]
Cystadane
oral
Oct 25, 1996
SUTIMLIMAB-JOME
Classical Complement Pathway Inhibitor [EPC]
Enjaymo
intravenous
Feb 4, 2022
OSILODROSTATIsturisa
oral
—Mar 6, 2020
IBUPROFEN LYSINENEOPROFEN
intravenous
Apr 13, 2006

Recordati Rare Diseases Trial Locations

Recordati Rare Diseases clinical trials are running at 107 sites in 10 countries. Click any country to drill down by state, city, and individual research facility. Proximity to a trial site is one of the most important factors in deciding whether to participate.

United States
26▼
France
24▼
United Kingdom
18▼
Italy
16▼
Spain
13▼
Germany
4▼
Austria
2▼
Japan
2▼
Norway
1▼
Sweden
1▼

Rare Disease Focus Areas (7)

Diseases targeted by Recordati Rare Diseases's clinical trial and drug development programs

AcromegalyEndocrine & Hormonal

Acromegaly is a rare hormonal disorder caused by excessive growth hormone production, typically from a pituitary adenoma, resulting in abnormal growth of hands, feet, and facial features. It also caus...

Prevalence: Approximately 50-130 cases per million people; estimated 25,000-30,000 people in the United States with about 3,000 new cases diagnosed per year
Cold Agglutinin DiseaseBlood & Immune

Cold agglutinin disease is a rare autoimmune hemolytic anemia caused by IgM autoantibodies that bind red blood cells in cold temperatures. The condition leads to intravascular hemolysis particularly i...

Prevalence: Estimated at 1 in 300,000 to 1,000,000 people
Cushing DiseaseEndocrine & Hormonal

Cushing Disease is a rare endocrine disorder caused by an ACTH-secreting pituitary adenoma that leads to excessive cortisol production. It causes distinctive changes including central obesity with pur...

Prevalence: Estimated 2-8 new cases per million people per year, though recent population studies suggest the true incidence may be higher. Cushing disease (pituitary-dependent) accounts for about 70% of endogenous Cushing syndrome cases. More common in women (3:1 female-to-male ratio)
HomocystinuriaMetabolic & Lysosomal

Homocystinuria is a rare inherited metabolic disorder characterized by elevated homocysteine levels in blood and urine. 3 biochemically distinct types exist; the most common involves cystathionine bet...

Prevalence: 1 in 340,000 births (cystathionine beta-synthase deficiency)
Methylmalonic AcidemiaMetabolic & Lysosomal

Methylmalonic acidemia is a group of inherited metabolic disorders in which the body cannot properly break down certain proteins and fats, leading to toxic buildup of methylmalonic acid. The most comm...

Prevalence: 1 in 50,000 to 100,000 live births in the U.S.; identified through newborn screening in all 50 states
ParagangliomaRare Cancers

Paragangliomas are rare neuroendocrine tumors arising from chromaffin tissue outside the adrenal medulla. Often hereditary with SDH mutations, they can produce catecholamines or other hormones. Treatm...

Prevalence: 1 in 300,000 to 1,000,000; ~30% are hereditary

Patient Resources

Organizations and resources related to Recordati Rare Diseases's rare disease focus areas

Frequently Asked Questions About Recordati Rare Diseases

Common questions about Recordati Rare Diseases's rare disease programs, clinical trials, and treatments.