ClinicalTrials.gg
RecruitingNCT01962415HSCT+RICUpdated Dec 15, 2025

Reduced Intensity Conditioning for Non-Malignant Disorders Undergoing UCBT, BMT or PBSCT

A Phase 2 interventional study of Hydroxyurea and Alemtuzumab in Primary Immunodeficiency (PID), Congenital Bone Marrow Failure Syndromes and Inherited Metabolic Disorders (IMD), sponsored by Paul Szabolcs. Recruiting at 1 site in United States. Open to participants aged 2 Months to 55 Years. Per ClinicalTrials.gov, last updated 2025-12-15.

Sponsored by Paul Szabolcs · Phase 2, Interventional, and Treatment

From the registry’s dates

  • Started Feb 2014; still recruiting 12 years 9 months later.
Phase
Phase 2
Study type
Interventional
Enrollment
100
Allocation
Non-randomized
Ages
2 Months to 55 Years
Sex
All
01

Study summary

The objective of this study is to evaluate the efficacy of using a reduced-intensity condition (RIC) regimen with umbilical cord blood transplant (UCBT), double cord UCBT, matched unrelated donor (MUD) bone marrow transplant (BMT) or peripheral blood stem cell transplant (PBSCT) in patients with non-malignant disorders that are amenable to treatment with hematopoietic stem cell transplant (HSCT). After transplant, subjects will be followed for late effects and for ongoing graft success.

Read the detailed description

For some non-malignant diseases (NMD; i.e., thalassemia, sickle cell disease, most immune deficiencies) a hematopoietic stem cell transplant may be curative by healthy donor stem cell engraftment alone. HSCT in patients with NMD differs from that in malignant disorders for two important reasons: 1) these patients are typically naïve to chemotherapy and immunosuppression. This may potentially lead to difficulties with engraftment. And 2) RIC with subsequent bone marrow chimerism may be beneficial even in mixed chimerism and result in decreased transplant-related mortality (TRM). Nevertheless, any previous organ damage, as a result of the underlying disease, may remain present after the HSCT.

For other diseases (metabolic disorders, some immunodeficiencies, etc.), a transplant is not curative. For these diseases, the main intent of the transplant is to slow down, or stop, the progress of the disease. In select few cases/diseases, the presence of healthy bone marrow derived cells may even prevent progression and prevent neurological decline.

Research funds are not available to assist with enrollment on this trial.

In this research study, instead of using the standard myeloablative conditioning, the study doctor is using RIC, in which significantly lower doses of chemotherapy will be used. The lower doses may not eradicate every stem cell in the patient's bone marrow, however, in the presented combination, the intention is to eliminate already formed immune cells and provide maximum growth advantage to healthy donor stem cells. This paves the way to successful engraftment of donor stem cells. Engrafting donor stem cells can outcompete, and donor lymphocytes could suppress, the patients' surviving stem cells. With RIC, the side effects on the brain, heart, lung, liver, and other organ functions are less severe and late toxic effects should also be reduced.

The purpose of this study is to collect data from the patients undergoing reduced-intensity conditioning before HSCT, and compare it to the standard myeloablative conditioning. It is expected there will be therapeutic benefits, paired with better survival rate, less organ toxicity and improved quality of life, following the RIC compared to the myeloablative regimen.

02

Conditions studied

  • Primary Immunodeficiency (PID)
  • Congenital Bone Marrow Failure Syndromes
  • Inherited Metabolic Disorders (IMD)
  • Hereditary Anemias
  • Inflammatory Conditions
  • Systemic Juvenile Idiopathic Arthritis (sJIA)
  • Juvenile Rheumatoid Arthritis (JRA)

Keywords

  • Severe Combined Immune Deficiency (SCID)
  • Omenn Syndrome
  • Bare Lymphocyte Syndrome (BLS)
  • Combined Immune Deficiency (CID) syndromes
  • Combined Variable Immune Deficiency (CVID) syndrome
  • Wiskott-Aldrich Syndrome
  • Leukocyte adhesion deficiency
  • Chronic granulomatous disease (CGD)
  • X-linked Hyper IgM (XHIM) syndrome
  • IPEX syndrome
  • Chediak - Higashi Syndrome
  • Autoimmune Lymphoproliferative Syndrome (ALPS)
  • Hemophagocytic Lymphohistiocytosis (HLH) syndromes
  • Lymphocyte Signaling defects
  • Dyskeratosis Congenita (DC)
  • Congenital Amegakaryocytic Thrombocytopenia (CAMT)
  • Osteopetrosis
  • Mucopolysaccharidoses
  • Hurler syndrome (MPS I)
  • Hunter syndrome (MPS II)
  • Leukodystrophies
  • Krabbe Disease
  • Metachromatic leukodystrophy (MLD)
  • X-linked adrenoleukodystrophy (ALD)
  • Alpha mannosidosis
  • Gaucher Disease
  • Thalassemia major
  • Sickle cell disease (SCD)
  • Diamond Blackfan Anemia (DBA)
  • Crohn's Disease
  • Inflammatory Bowel Disease
  • Hematopoietic Stem Cell Transplant (HSCT)
  • Congenital transfusion dependent anemias
  • Globoid cell leukodystrophy
  • Hereditary diffuse leukoencephalopathy with spheroids (HDLS)
  • Systemic Juvenile Idiopathic Arthritis (sJIA)
  • Juvenile Rheumatoid Arthritis (JRA)
03

In context

Primary Immunodeficiency Diseases

211 studies on the registry are indexed under Primary Immunodeficiency Diseases; 51 are open to participants now.

This study's planned enrollment of 100 is above the median of 36 across 125 interventional studies indexed under Primary Immunodeficiency Diseases.

Browse Primary Immunodeficiency Diseases studies →

Lead sponsor

Paul Szabolcs is the lead sponsor of 9 studies on the registry; 9 are open to participants now.

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

04

Who can participate

Ages eligible
2 Months to 55 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. A 4/6, 5/6 or 6/6 HLA matched related or unrelated UCB unit available that will deliver a pre-cryopreservation total nucleated cell dose of ≥ 3 x 10e7 cells/kg, or double unit grafts, each cord blood unit delivering at least 2 x 10e7 cells/kg OR an 8 of 8 or 7 of 8 HLA allele level matched unrelated donor bone marrow or peripheral blood progenitor graft.
  2. Adequate organ function as measured by:

    1. Creatinine ≤ 2.0 mg/dL and ≥ 50 mL/min/1.73 m2.
    2. Hepatic transaminases (/AST) ≤ 4 x (ULN).
    3. Adequate cardiac function by echocardiogram or radionuclide scan (shortening fraction > 26% or > 40% or > 80% of normal value for age).
    4. Pulmonary evaluation testing demonstrating CVC or /FVC of ≥ 50% of predicted for age and/or resting pulse oximeter ≥ 92% on room air or clearance by the pediatric or adult pulmonologist. For adult patients DLCO (corrected for ) should be ≥ 50% of predicted if the DLCO can be obtained.
  3. Written and/or assent according to FDA guidelines.
  4. Negative pregnancy test if pubertal and/or menstruating.
  5. negative.
  6. A non-malignant disorder amenable to treatment by stem cell transplantation, including but not limited to:

    1. Primary Immunodeficiency syndromes including but not limited to:

      • Severe Combined Immune Deficiency (SCID) with NK cell activity
      • Omenn Syndrome
      • Bare Lymphocyte Syndrome (BLS)
      • Combined Immune Deficiency (CID) syndromes
      • Combined Variable Immune Deficiency (CVID) syndrome
      • Wiskott-Aldrich Syndrome
      • Leukocyte adhesion deficiency
      • Chronic granulomatous disease (CGD)
      • X-linked Hyper IgM (XHIM) syndrome
      • IPEX syndrome
      • Chediak - Higashi Syndrome
      • Lymphoproliferative Syndrome (ALPS)
      • Hemophagocytic Lymphohistiocytosis (HLH) syndromes
      • Lymphocyte Signaling defects
      • Other primary immune defects where hematopoietic stem cell transplantation may be beneficial
    2. Congenital bone marrow failure syndromes including but not limited to:

      • Dyskeratosis Congenita (DC)
      • Congenital Amegakaryocytic Thrombocytopenia (CAMT)
      • Osteopetrosis
    3. Inherited Metabolic Disorders (IMD) including but not limited to:

      • Mucopolysaccharidoses

        • Hurler syndrome (MPS I)
        • Hunter syndrome (MPS II)
      • Leukodystrophies

        • Krabbe Disease, also known as globoid cell leukodystrophy
        • Metachromatic leukodystrophy (MLD)
        • X-linked adrenoleukodystrophy (ALD)
        • Hereditary diffuse leukoencephalopathy with spheroids (HDLS)
      • Other inherited metabolic disorders

        • alpha mannosidosis
        • Gaucher Disease
      • Other inheritable metabolic diseases where hematopoietic stem cell transplantation may be beneficial.
    4. Hereditary anemias

      • Thalassemia major
      • Sickle cell disease (SCD) - patients with sickle disease must have one or more of the following:

        • Overt or silent stroke
        • Pain crises ≥ 2 episodes per year for past year
        • One or more episodes of acute chest syndrome
        • Osteonecrosis involving ≥ 1 joints
        • Priapism
      • Diamond Blackfan Anemia (DBA)
      • Other congenital transfusion dependent anemias
    5. Inflammatory Conditions

      • Crohn's Disease/Inflammatory Bowel Disease

Exclusion criteria

Exclusion:

  1. hematopoietic stem cell transplant within the previous 6 months.
  2. Any active or MDS.
  3. Severe acquired aplastic anemia.
  4. Uncontrolled bacterial, viral or fungal infection (currently taking medication and with progression of clinical symptoms).
  5. Pregnancy or nursing mother.
  6. Poorly controlled pulmonary hypertension.
  7. Any condition that precludes serial follow-up.
Terms in these criteria, in plain language(11)

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.

Creatinine clearance (CrCl)

How quickly the kidneys clear creatinine, a waste product, from the blood. A study may estimate it from a blood test with age, weight and sex (often by the Cockcroft–Gault formula), or measure it using blood and urine collected over a set time. Given in mL/min; higher is better.

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.

LVEF (left ventricular ejection fraction)

The share of blood the heart’s main pumping chamber (the left ventricle) pushes out with each beat, measured by an echocardiogram (heart ultrasound) or a MUGA scan. About 50–70% is normal.

FEV1

From a breathing test (spirometry): how much air you can blow out in the first second. Often given as a percentage of what is expected for your age, height and sex.

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).

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.

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.

Autoimmune disease

A condition in which the immune system attacks the body’s own tissues, such as rheumatoid arthritis, lupus, psoriasis, type 1 diabetes or inflammatory bowel disease.

Immunotherapy studies often leave out active autoimmune disease, and some name exceptions, such as thyroid disease on replacement hormone. Check the exceptions this study lists.

Allogeneic and autologous transplant

Stem cell (bone marrow) transplants. Allogeneic uses cells from a donor; autologous uses your own cells, collected earlier and given back.

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.

05

Study design

Phase
Phase 2
Primary purpose
Treatment
Allocation
Non-randomized
Intervention model
Parallel assignment
Masking
None (open label)
Enrollment
100 participants (estimated)

Study arms

  • Experimental
    UCBT:transfusion dependent anemias or increased rejection risk

    Alemtuzumab, Hydroxyurea, Fludarabine, Melphalan, and Thiotepa conditioning regimen prior to allogenic HSCT.

    Drug: Hydroxyurea · Drug: Alemtuzumab · Drug: Fludarabine · Drug: Melphalan · Drug: Thiotepa

  • Experimental
    BMT, PBSCT and not transfusion dependent UCBT

    Alemtuzumab, Hydroxyurea, Fludarabine, Melphalan, and Thiotepa conditioning regimen prior to allogenic HSCT.

    Drug: Hydroxyurea · Drug: Alemtuzumab · Drug: Fludarabine · Drug: Melphalan · Drug: Thiotepa

Interventions

  • Oral administration

    Also known as: hydroxycarbamide, Hydrea, Droxia

  • Intravenous (IV) administration.

    Also known as: Campath

  • IV administration

    Also known as: Fludara

  • IV administration

    Also known as: Melphalan hydrochloride, Alkeran

  • IV administration

06

What researchers measure

Primary outcomes

  1. Post-transplant treatment-related mortality (TRM)

    The number of deaths related to the research intervention at day 100, 6 months, and 1 year post-transplant.

    Time frame: 1 year post-transplant

  2. Neurodevelopmental milestones

    Evaluation of the pace of attaining neurodevelopmental milestones after reduced-intensity conditioning as compared to myeloablative conditioning historical controls from the target population(s).

    Time frame: 1 year post-transplant

  3. Immune Reconstitution

    Evaluation of the pace of immune reconstitution.

    Time frame: 1 year post-transplant

  4. Severe opportunistic infections

    Evaluation of the incidence of severe opportunistic infections.

    Time frame: 1 year post-transplant

  5. GVHD occurrence

    Description of the incidence of acute graft versus host disease (GVHD) (II-IV) and chronic extensive GVHD.

    Time frame: 1 year post-transplant

Secondary outcomes

  1. Donor cell engraftment

    Determination of the feasibility of attaining robust donor cell engraftment (\>50% donor chimerism at 6 months) following reduced-intensity conditioning (RIC) regimens prior to HSCT in the target population(s).

    Time frame: 6 months post-transplant

  2. Normal enzyme level

    Determination of the feasibility of attaining and sustaining normal enzyme levels in the target population(s).

    Time frame: 1 year post-transplant

  3. Neutrophil recovery

    Determination of the pace of neutrophil recovery.

    Time frame: 1 year post-transplant

  4. Platelet recovery

    Determination of the pace of platelet recovery.

    Time frame: 1 year post-transplant

  5. Grade 3-4 organ toxicity

    The number of grade 3-4 organ adverse events.

    Time frame: 1 year post-transplant

  6. Late graft failure

    Evaluation of the incidence of late graft failure.

    Time frame: 1 year post-transplant

07

Study locations

1 of 1 sites recruiting
  • UPMC Children's Hospital of Pittsburgh
    Pittsburgh, Pennsylvania 15224, United States
    Recruiting
    • Shawna McIntyre, RN · Contactmcintyresm@upmc.edu · 412-692-5552
    • Paulina Horvei, MD · Sub investigator
    • Randy Windreich, MD · Sub investigator
    • Archana Ramgopal, DO · Sub investigator
08

References and documents

Publications

  • Vander Lugt MT, Chen X, Escolar ML, et al. Reduced-intensity single-unit unrelated cord blood transplant with optional immune boost for nonmalignant disorders. Blood Adv. 2020;4(13):3041-3052. Blood Adv. 2020 Aug 11;4(15):3508. doi: 10.1182/bloodadvances.2020002967. No abstract available. PubMed 32750127 ↗
  • Vander Lugt MT, Chen X, Escolar ML, Carella BA, Barnum JL, Windreich RM, Hill MJ, Poe M, Marsh RA, Stanczak H, Stenger EO, Szabolcs P. Reduced-intensity single-unit unrelated cord blood transplant with optional immune boost for nonmalignant disorders. Blood Adv. 2020 Jul 14;4(13):3041-3052. doi: 10.1182/bloodadvances.2020001940. PubMed 32634238 ↗

Individual participant data

Plan to share: No

09

Timeline

Tracking since Sep 25, 2026
ElapsedEstimatedEstimated, not yet reached

Started Feb 2014 (actual). Primary completion is estimated for Nov 2026, 153 months after the start.

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

Registered
Oct 10, 2013
First posted
Oct 14, 2013
StartActual
Feb 4, 2014
Primary completionEst.
Nov 2026
CompletionEst.
Nov 2027
Last update
Dec 15, 2025
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 Dec 15, 2025, before this site started recording changes on Sep 25, 2026. Its history is on ClinicalTrials.gov ↗
10

Registry details

Key details

Study ID
NCT01962415
Lead sponsor
Paul Szabolcs
Responsible party
Paul Szabolcs (Chief, BMT-CT at CHP of UPMC and Professor of Pediatrics and Immunology, University of Pittsburgh, University of Pittsburgh) — Sponsor-investigator
First posted
Oct 14, 2013
Start date
Feb 4, 2014
Primary completion
Nov 2026 (estimated)
Completion
Nov 2027 (estimated)
Last update
Dec 15, 2025

Study contacts

Paul Szabolcs, MD
Contact
paul.szabolcs@chp.edu
412-692-5427
Shawna McIntyre, RN
Contact
mcintyresm@upmc.edu
412-692-5552
Paul Szabolcs, MD
principal investigator · University of Pittsburgh

Oversight

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

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Studies of the drugs tested here: Hydroxyurea · Alemtuzumab · Fludarabine · Melphalan · Thiotepa

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