ClinicalTrials.gg
CompletedNCT06897358Updated Sep 18, 2026

Leniolisib for Immune Dysregulation in CVID

A Phase 2 interventional study of Leniolisib in Common Variable Immunodeficiency (CVID), sponsored by Pharming Technologies B.V.. Completed at 7 sites in 3 countries. Open to participants aged 12 Years to 75 Years. Per ClinicalTrials.gov, last updated 2026-09-18.

Sponsored by Pharming Technologies B.V. (part of Pharming Group N.V.) · Phase 2, Interventional, and Treatment

Phase
Phase 2
Study type
Interventional
Enrollment
27
Allocation
Not applicable
Ages
12 Years to 75 Years
Sex
All
01

Study summary

In this study, common variable immunodeficiency (CVID) patients will all receive the study drug, leniolisib, for a treatment period of 6 months. Participants will start on a lower dose of leniolisib, followed by a mid and then a higher dose level. The primary goal is to assess the safety and tolerability of leniolisib, and secondary goal is to assess the potential for leniolisib to provide benefits for patients.

Read the detailed description

The study includes administration of increasing dose levels of leniolisib in approximately 20 CVID patients presenting with clinical manifestations of immune dysregulation at study entry. Enrollment will include both patients without and those with genetic drivers identified for their CVID.

All subjects participating will receive leniolisib film-coated tablets (FCTs) with a planned dose regimen consisting of a starting dose of 10 mg twice daily (BID) for 4 weeks, followed by a dose escalation to 30 mg BID for 4 weeks, and then 70 mg BID for an additional 16 weeks. Dose adjustments are allowed during treatment if deemed clinically necessary.

Subjects not continuing leniolisib treatment outside the current protocol will be followed up, with the EoS visit planned to occur approximately 28 days after last dose of leniolisib.

02

Conditions studied

  • Common Variable Immunodeficiency (CVID)
03

In context

Common Variable Immunodeficiency

54 studies on the registry are indexed under Common Variable Immunodeficiency; 13 are open to participants now.

This study's enrollment of 27 is below the median of 40 across 39 interventional studies indexed under Common Variable Immunodeficiency.

Browse Common Variable Immunodeficiency studies →

Lead sponsor

Pharming Technologies B.V. is the lead sponsor of 22 studies on the registry; 3 are open to participants now.

Of its 5 completed or terminated interventional studies of FDA-regulated products, 3 (60%) have results posted.

Counted across the registry records on this site, refreshed daily.

04

Who can participate

Ages eligible
12 Years to 75 Years
Sexes eligible
All
Accepts healthy volunteers
No

Go through the criteria one by one — yes, no or not sure — and take the list to your doctor or the study team. Kept in this browser only.

Inclusion criteria

  1. Subject is 12 to 75 years of age (inclusive).

    a. Specifically at sites located in the United Kingdom subjects must be 18 to 75 years of age (inclusive)

  2. Subject must have a minimum body weight of 45 kg
  3. Subject has a clinical diagnosis of CVID supported by all of the following (a thru c):

    1. A low IgG level compared to age-adjusted reference range [OR if this cannot be documented, subject must have one of the following: i) absent isohemagglutinins and/or poor response to vaccines; or ii) Low class-switched memory B cells less than 2%]
    2. Low IgA and/or IgM compared to age-adjusted reference range
    3. No identified secondary causes of hypogammaglobulinemia
  4. Inborn Errors of Immunity/ PID Panel testing:

    1. Lacks an identified pathogenic/likely pathogenic genetic driver for their CVID primary immunodeficiency OR
    2. Subject has an identified pathogenic/likely pathogenic genetic driver(s) for their CVID limited to the following genes: TNFRSF13B (TACI), TNFRSF13C (BAFFR), CD19, CD20, CD81, CR2 (CD21), LRBA, CTLA4, NFKB1, NFKB2, IKZF1 (excluding variants associated with combined immune deficiency), CARD11 (gain of function), SH3KBP1, SEC61A1 IRF2BP2, CTNNBL1, TWEAK or PTEN.
  5. Subject has lymphoproliferation, as evidenced by CT imaging: splenomegaly with craniocaudal spleen measurement >10 cm and/or lymphadenopathy with at least 1 measurable index lymph node (long axis >1.5 cm) as per Cheson methodology.
  6. Subject has at least ONE of the following CVID clinical manifestations of immune dysregulation:

    1. Clinical symptoms related to splenomegaly or lymphadenopathy which interfere with activities of daily living or are associated with chronic pain, dyspnea, functional impairment, or limitations in usual activities
    2. One or more blood cytopenias related to CVID (and not due to other medical conditions such as iron-deficiency or lead exposure) defined as \<10 g/dL, count \<100,000/µL, and/or \<1,000/µL
    3. Previous pathologic confirmation of ILD and attributed to CVID by the Investigator with quantifiable CT chest imaging findings evident on baseline CT scan
    4. Clinical diagnosis of CVID enteropathy or other GI tract diagnosis attributable to CVID by the Investigator which involves the small intestine and meets the following enteropathy criteria:

    i. Clinical symptoms of GI disease including at least 1 of: abdominal pain or diarrhea at least 3 days of the week for at least 4 weeks or longer, or dependence on supplemental enteral or parenteral nutrition ii. Lacks a clinical diagnosis of Celiac Disease, and negative human leukocyte antigen (HLA)-DQ2 and -DQ8 testing at screening iii. Presence of small bowel villous shortening/atrophy/blunting with or without intraepithelial lymphocytosis noted in a pathology report pertaining to a small bowel performed within 5 years of enrollment iv. Negative stool PCR Gastrointestinal Profile at screening

  7. At screening, vital signs. Ranges:

    Systolic blood pressure 80-159 mm Hg Diastolic blood pressure 50-109 mm Hg Pulse rate 50-110 beats per minute (bpm) Oxygen saturation 93-100%

  8. Subjects or their legal representatives (for subjects under the age of 18 years) must be able to communicate with the Investigator and understand and comply with the requirements of the study, including an ability to provide written .

Exclusion criteria

Exclusion Criteria:

  1. Laboratory evidence of significant T cell deficiency including CD4+ T cells \<200/uL.
  2. Laboratory evidence of significant NK cell deficiency including NK cells \<1% of peripheral blood lymphocytes or less than 50/mcL.
  3. Clinical history of infections suggestive of T cell or NK cell deficiency such as Pneumocystis jirovecii, atypical mycobacteria, severe warts, or unusually severe (as determined by the PI) infections with herpesviruses.
  4. Presence of uncontrolled chronic/recurrent infectious disease (except those considered to be characteristic of antibody deficiency).
  5. Positive blood polymerase chain reaction (PCR) for cytomegalovirus.
  6. Evidence of tuberculosis infection
  7. Positive blood cryptococcal antigen
  8. Previous or concurrent use of medication, such as:

    • Use of an mTOR inhibitor or a PI3K inhibitor within 3 weeks.
    • Rituximab or other B cell depleting antibodies, belimumab, cyclophosphamide, or alemtuzumab within 6 months.
    • Cyclosporine A, mycophenolate mofetil, 6-mercaptopurine, azathioprine, methotrexate, tacrolimus, ruxolitinib, or other Janus kinase (JAK) inhibitors within 3 weeks.
    • above 25 mg prednisone or equivalent per day within 2 weeks
    • Immunosuppressive monoclonal or polyclonal antibody therapeutics such as directed against TNF-alpha, α₄β₇ integrin, IL-6, IL-12/IL-23 and others within 5 half-lives
    • Other immunosuppressive agents expected to have a significant impact on immune cell number or function.
    • Abatacept is allowed during study if the subject has been receiving a stable dosing regimen for more than 3 months .
    • Enteral budesonide is allowed during study if the subject has been receiving a stable dosing regimen for more than 3 months.
  9. Subject is receiving concurrent treatment with another therapy or use of another investigational therapy less than 4 weeks or 5 half-lives (whichever is longer).
  10. HIstory of to the study drug or to drugs of similar chemical classes.
  11. Current use of medication known to be a strong inhibitor, or moderate or strong inducer, of isoenzyme cytochrome P450 .
  12. Current use of medications that, to a larger extent, are BCRP, OATP1B1, and/or OATP1B3 substrates.
  13. History of or positive test result at screening.
  14. Any surgical or medical condition which may jeopardize the subject in case of participation in the study.

    • Chronic need for supplemental oxygen or invasive or non-invasive respiratory support.
    • Liver failure or clinically significant liver disease or dysfunction as indicated by (ALT) or aspartate transaminase (AST) greater than 2.5 times the , greater than 1.5 times the upper limit of normal, (INR) greater than 1.5 in the absence of anticoagulation, or presence of diuretic ascites.
    • Elevation of ALT or AST up to 6 times the upper limit of normal is allowed if elevation is determined to be a consequence of immune dysregulation by the site Principal Investigator and if the elevation has been stable for 3 months prior to enrollment.
    • History of significant renal injury/renal disease severely affecting renal function or presence of impaired renal function as indicated by estimated of less than 30 mL/min/1.73 m2.
  15. A positive surface antigen (HBsAg), positive hepatitis B PCR, positive PCR, or positive hepatitis C antibody result at screening.
  16. Administration of starting from 6 weeks before first dose of study medication
  17. Subject has a history of (except lymphoma) within 3 years before the first dose of study medication or has evidence of residual disease from a previously diagnosed malignancy, except for adequately treated cancers of the skin (basal or squamous cell) or carcinoma in situ of the uterine cervix.
  18. Subject has a previous diagnosis of lymphoma that has been treated with chemotherapy, radiotherapy, or transplant within 1 year of the first dose of study medication or is anticipated to require lymphoma treatment within 6 months of the first dose of study medication.
  19. Subject has uncontrolled post-transplant lymphoproliferative disease-like Epstein-Barr virus related lymphoproliferative disease.
  20. Donation or loss of 400mL or more of blood within 8 weeks before the first dose of study medication
  21. Subject has had major surgery requiring hospitalization or radiotherapy within 4 weeks prior to the first dose of study medication or has a planned or expected major surgical procedure during the study period.
  22. Pregnant or nursing (lactating) women.
  23. Individuals of , unless they are using highly effective methods of
Terms in these criteria, in plain language(24)

Underlined terms in the criteria open these too. Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.

Hemoglobin (Hb)

The protein in red blood cells that carries oxygen. A low level is anaemia, which can cause tiredness and breathlessness. Measured in g/dL or g/L (9 g/dL is 90 g/L).

Platelets

Blood cells that help blood clot. Too few raises the risk of bleeding and bruising. A usual adult range is about 150–400 × 10⁹/L (150,000–400,000 per µL); each lab has its own reference range.

Absolute neutrophil count (ANC)

The number of neutrophils, white blood cells that help fight infection, in a given amount of blood. Too few raises the risk of infection.

It is a count, not a percentage of the white cells. Limits are written in units that mean the same: ≥ 1.5 × 10⁹/L is ≥ 1,500 per mm³ (µL). Each lab has its own reference range.

Biopsy and archival tissue

A biopsy takes a small piece of tissue to examine. “Archival tissue” is a sample already taken, for example at diagnosis, and kept by the hospital.

Whether a stored sample will do depends on when it was taken, how much there is and what the study needs. Ask whether the study accepts your stored sample or needs a new biopsy.

Informed consent

Before you join, the study team explains what taking part involves — its purpose, what happens, the risks and possible benefits — and answers your questions, so you can decide freely. Consent is usually recorded on a form (the informed consent form, ICF) signed by you or, where the law allows, by someone legally authorised to decide for you.

You can keep asking questions during the study, you are told of new information that matters, and you can choose to leave at any time.

Clinically significant

Judged by the study doctor to matter for your health or for the study. It is a doctor’s decision, so ask the study team if you are unsure whether something counts.

Immunosuppression

A weakened immune system. It can come from an illness, such as HIV or some blood cancers, or from medicines that turn the immune system down, for example after an organ transplant or for an autoimmune disease; steroids at higher doses count.

Read whether the line is about a condition or about medicines, and which medicines and doses it means.

Corticosteroids (steroids)

Anti-inflammatory medicines such as prednisone, prednisolone and dexamethasone — not the anabolic steroids used for muscle.

Studies differ in what they allow: check which steroid medicines, routes (tablets, injections, creams, inhalers, eye drops) and doses this study accepts.

Investigational drug or device

A drug or device being studied in a clinical trial.

It may be new, or already approved and being studied for another use, dose or form. Criteria often leave out people who took part in another study of one within a recent period, commonly 30 days or five half-lives.

Hypersensitivity

An allergy, or another reaction of the immune system, to a substance. “Hypersensitivity to the study drug” means a known allergic reaction to it — not every side effect a medicine can have.

CYP3A (CYP3A4) inhibitors and inducers

CYP3A is a group of enzymes, mainly CYP3A4, in the liver and gut that break down many medicines. Some medicines, supplements and foods (grapefruit, St John’s wort) slow them down or speed them up, which changes how much of a study drug stays in the body.

Studies list them so they can be avoided or switched; bring a list of everything you take, including supplements.

HIV

The human immunodeficiency virus, which weakens the immune system.

Many studies now accept people whose HIV is controlled on treatment, judged by the viral load and the CD4 count. Check the limits this study sets.

ALT and AST (liver enzymes)

Two enzymes measured in a routine blood test of the liver. Higher levels can mean the liver is under strain or damaged. SGPT and SGOT are older names for ALT and AST.

Criteria usually give a limit as a multiple of the upper limit of normal (ULN), often higher when cancer has spread to the liver.

ULN (upper limit of normal)

The top of the normal range for a blood test, as set by the laboratory that runs it. Each lab prints its own range next to your result.

“≤ 2.5 × ULN” means the result can be up to two and a half times that top value.

Bilirubin

A yellow substance made when red blood cells are broken down, which the liver clears. A high level can mean a problem with the liver or the bile ducts.

Criteria often allow more for people with Gilbert’s syndrome, a harmless inherited condition that raises bilirubin.

INR, PT and aPTT (clotting tests)

Blood tests of how long blood takes to clot. The INR is the prothrombin time (PT) put on a common scale; about 1 is usual for someone not taking a blood thinner.

Criteria often make an exception for people on a blood thinner such as warfarin, whose INR is raised on purpose.

Relapsed and refractory

Relapsed: the illness came back after treatment had worked. Refractory: it did not respond to treatment, or stopped responding while still on it.

GFR and eGFR (kidney filtering)

GFR (glomerular filtration rate) is how much blood the kidneys filter each minute. It is usually estimated from a blood test — eGFR, by formulas such as CKD-EPI or MDRD — and some studies ask for it to be measured directly instead. Usually given in mL/min/1.73 m².

Check the method, the units and the minimum the study states. A value of 90 or above is in the normal-or-high range, but kidney damage can show in other tests too.

Hepatitis B tests

Hepatitis B is a virus that infects the liver. These are separate tests: HBsAg positive usually means a current infection (a recent vaccination can briefly cause it too); total anti-HBc (HBcAb) positive means an infection now or in the past; HBV DNA measures how much virus is in the blood.

Some studies accept a past infection if HBV DNA is undetectable, sometimes with antiviral medicine during the study. Check what this study allows.

Hepatitis C tests

Hepatitis C is a virus that infects the liver. An HCV antibody test can stay positive after an infection has cleared (and is occasionally positive without one); an HCV RNA test shows whether the virus is there now.

After treatment, hepatitis C counts as cured when HCV RNA is still undetectable 12 weeks or more after the treatment ended. Studies often accept people cured this way.

Live vaccines

Vaccines made with a weakened form of the germ, such as measles–mumps–rubella (MMR), chickenpox and yellow fever. They can be risky when the immune system is weakened. Flu injections are not live; the nasal flu spray is.

Cancer (malignancy)

Malignancy means cancer. Criteria about another or earlier malignancy ask whether you have had a different cancer, usually within a set number of years.

Some are commonly allowed, such as treated skin cancers other than melanoma and early cancers removed completely — check the exceptions this study lists.

Childbearing potential

Able to become pregnant: from the first period until menopause, unless permanently unable to through surgery (removal of the womb, or of both ovaries or both fallopian tubes).

Criteria for people of childbearing potential usually ask for a negative pregnancy test and for contraception during the study and for a time after it.

Contraception

Ways of preventing pregnancy. “Highly effective” methods fail less than 1% of the time a year when used correctly — for example an IUD or an implant.

Criteria usually say which methods count and how long to keep using them after the last dose, sometimes for male participants too. Some studies accept a partner’s vasectomy if it was confirmed successful and that person is the participant’s only sexual partner.

05

Study design

Phase
Phase 2
Primary purpose
Treatment
Allocation
Not applicable
Intervention model
Single group
Masking
None (open label)
Enrollment
27 participants (actual)

Study arms

  • Experimental
    Leniolisib

    All subjects participating will receive leniolisib film-coated tablets (FCTs) with a planned dose regimen consisting of a starting dose of 10 mg twice daily (BID) for 4 weeks, followed by a dose escalation to 30 mg BID for 4 weeks, and then 70 mg BID for an additional 16 weeks.

    Drug: Leniolisib

Interventions

  • Planned dose will range from 10 mg twice daily to 70 mg twice daily

    Also known as: Joenja

06

What researchers measure

Primary outcomes

  1. Safety & Tolerability

    To assess the number of AEs/SAEs and number of participants with AEs/SAEs

    Time frame: From baseline to the end of 24 weeks of treatment

Secondary outcomes

  1. Impact of leniolisib on lymphoproliferation measured as index lesions

    Percent change from baseline in lymphadenopathy measured as the sum of product of diameters (SPD) in the index lesions selected per the Cheson methodology

    Time frame: From baseline to the end of 24 weeks of treatment

  2. Impact of leniolisib on lymphoproliferation measured as non-index lesions

    Percent change from baseline in lymphadenopathy measured as SPD of measurable non-index lesions selected as per the Cheson methodology

    Time frame: From baseline to the end of 24 weeks of treatment

  3. Impact of leniolisib on spleen size

    Percent change from baseline in splenomegaly measured by three-dimensional (3D) volume and bi-dimensional (2D) size of spleen

    Time frame: From baseline to the end of 24 weeks of treatment

  4. Impact of leniolisib on hemoglobin

    Hemoglobin will be evaluated over time

    Time frame: From baseline to the end of 24 weeks of treatment

  5. Impact of leniolisib on platelets

    Platelet count will be evaluated over time

    Time frame: From baseline to the end of 24 weeks of treatment

  6. Impact of leniolisib on neutrophils

    Absolute neutrophil counts will be evaluated over time

    Time frame: From baseline to the end of 24 weeks of treatment

  7. Impact of leniolisib on GLILD or other PID-related ILD

    The change in CT evidence of GLILD or other PID-related ILD over time will be compared using the Hartmann Scoring Methodology

    Time frame: From baseline to the end of 24 weeks of treatment

  8. Impact of leniolisib on pulmonary function in FEV1

    Change in FEV1 will be evaluated

    Time frame: From baseline to the end of 24 weeks of treatment

  9. Impact of leniolisib on pulmonary function in FVC

    Change in FVC will be evaluated

    Time frame: From baseline to the end of 24 weeks of treatment

  10. Impact of leniolisib on pulmonary function in TLC

    Change in TLC will be evaluated

    Time frame: From baseline to the end of 24 weeks of treatment

  11. Impact of leniolisib on pulmonary function in DLCO

    Change in DLCO will be evaluated

    Time frame: From baseline to the end of 24 weeks of treatment

  12. Impact of leniolisib on B and T cell subsets of interest

    The percentages of naïve B cells, CD21low B cells, and T regulatory cells over time

    Time frame: From baseline to the end of 24 weeks of treatment

  13. Impact of leniolisib on CXCL13 and soluble IL-2Rα levels

    The levels of CXCL13 and soluble IL-2Rα over time

    Time frame: From baseline to the end of 24 weeks of treatment

  14. To assess the PK of leniolisib in CVID (Cmax)

    PK parameters for leniolisib defined by Cmax

    Time frame: From baseline to the end of 24 weeks of treatment

  15. To assess the PK of leniolisib in CVID (AUC0-t)

    PK parameters for leniolisib defined by AUC0-t

    Time frame: From baseline to the end of 24 weeks of treatment

  16. To assess the PK of leniolisib in CVID (Tmax)

    PK parameters for leniolisib defined by Tmax

    Time frame: From baseline to the end of 24 weeks of treatment

  17. To assess the PK of leniolisib in CVID (T½)

    PK parameters for leniolisib defined by T½

    Time frame: From baseline to the end of 24 weeks of treatment

07

Study locations

7 sites
  • Children's Hospital Colorado
    Aurora, Colorado 80045, United States
  • National Institute of Health
    Bethesda, Maryland 20892, United States
  • Lahey Hospital & Medical Center
    Burlington, Massachusetts 01805, United States
  • Mount Sinai Hospital
    New York, New York 10029, United States
  • Texas Children's Hospital
    Houston, Texas 77030, United States
  • IIS La Fe
    Valencia, Spain
  • Leeds Teaching Hospital NHS Trust
    Leeds, United Kingdom
08

Timeline

Tracking since Sep 25, 2026
ElapsedEstimatedEstimated, not yet reached

Ran from Feb 2025 to primary completion in Aug 2026, 18 months.

How these figures are worked out, and which studies are left out of them.

Registered
Mar 12, 2025
First posted
Mar 26, 2025
StartActual
Feb 12, 2025
Primary completionActual
Aug 12, 2026
CompletionActual
Aug 12, 2026
Last update
Sep 18, 2026
What these dates mean
Start.
When the first participant enrolled; while estimated, when the study expects to open to recruitment.
Primary completion.
When the last participant was examined or treated to collect data for the study's main question, its primary outcome. A study that stopped early gives the date its data collection stopped.
Completion.
When the last participant's last visit took place, for every outcome, secondary ones and side effects included: the end of the study. Often later than primary completion, sometimes the same day.
Actual and Est.
Actual means the registry says the date has happened. Est. (estimated) is a date the sponsor plans or expects. It can still move, and the sponsor is expected to change it to actual once it has passed.
No changes since tracking began. The registry record was last updated on Sep 18, 2026, before this site started recording changes on Sep 25, 2026. Its history is on ClinicalTrials.gov ↗
09

Registry details

Key details

Study ID
NCT06897358
Collaborators
Lahey Hospital & Medical Center
Responsible party
Sponsor
First posted
Mar 26, 2025
Start date
Feb 12, 2025
Primary completion
Aug 12, 2026
Completion
Aug 12, 2026
Last update
Sep 18, 2026

Oversight

Data monitoring committee
Yes
FDA-regulated drug
Yes
FDA-regulated device
No
View the source record on ClinicalTrials.gov ↗

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This study is completed, as verified in Sep 2026. You cannot join it, but the record below documents what was studied.

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