Congenital Muscular Dystrophy Due to Lamin A/C MutationNCT05154851
HBCMD01- Expanded Access for the Treatment of Congenital Muscular Dystrophy.
A study testing HB-adMSCs in people with Congenital Muscular Dystrophy Due to Lamin A/C Mutation, run by Hope Biosciences Research Foundation at 1 site in United States.
Trial summary
This individual patient expanded access IND is requested for a patient diagnosed with LMNA-related congenital muscular dystrophy (L-CMD). In this expanded access, the patient will receive the investigational product through 14 intravenous infusions, followed by Follow-Up visit and an End of Study. Read more about this study
- Who is it for?
- Any age
- Conditions the study is for
- Congenital Muscular Dystrophy Due to Lamin A/C Mutation
- What is being tested?
- HB-adMSCs
- How many people
- Not given
- Where
- 1 siteUnited States
- Study dates
- Start not givento not given
- Phase
- Expanded access
- Are there results?
- None posted in the registry
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages Any age
- All sexes
- Child, Adult, Older adult
Who may be able to join
- Subject diagnosed with LCMNA congenital muscular dystrophy.
- Subject must have banked his stem cells at Hope Biosciences LLC.
Who cannot join
- Subject has any active infection requiring medications.
- The subject has any known coagulation anomalies.
Trial locations and contacts
1 site in 1 country.
United States1 site
Hope Biosciences Stem Cell Research Foundation
Sugar Land, Texas, 77478
About this study
Official title: An Expanded Access IND to Evaluate the Safety and Efficacy of Autologous HBadMSCs for the Treatment of a Single Pediatric Patient With Congenital Muscular Dystrophy.
This individual patient expanded access IND is requested for a patient diagnosed with LMNA-related congenital muscular dystrophy (L-CMD). In this expanded access, the patient will receive the investigational product through 14 intravenous infusions, followed by Follow-Up visit and an End of Study.
Read the detailed description
This Expanded Access includes an up to 28 days screening period, a 44-week Treatment Period, and a 52-week Safety Follow-up Period. All periods are associated with evaluations and procedures that must be performed at specific time points.
-Screening
At the Screening Visit (Visit 1), the study's participant information will be collected by delegated personnel to evaluate trial eligibility. The following information is required to determine eligibility:
- Parent Permission before any trial-related activities.
- Collection of demographic information, such as age, race, ethnicity, date of birth, gender, and relevant medical and surgical history.
- Collection of Medical History and concomitant medications, including relevant information about study participants' past and present health.
- Inclusion and Exclusion criteria evaluation.
- Measurement of vital signs includes respiratory rate, body temperature, blood pressure, pulse rate, oxygen saturation, and weight and height measurement.
- Blood chemistry, Coagulation panel, Inflammatory Markers, \& Hematology.
- Physical examination by Principal Investigator.
Within 28 days of the Visit 1 - Screening, the principal investigator must decide the participant's eligibility. Once the principal investigator has confirmed the subject's eligibility, the subject will be scheduled to receive Infusion 1.
Infusion 1 - Baseline
The following evaluations will be performed during this visit:
- Update medical history and concomitant medications if any change occurred since the last visit.
- Measure vital signs, including respiratory rate, body temperature, blood pressure, pulse rate, oxygen saturation, and weight measurement.
- Physical examination by Principal Investigator. As this 2-year-old is unable to walk or hold his head up without physical support, assessment for neurologic sequelae will include the following observations and discharge instructions for observations to continue at home by the primary caregivers:
- Unusual /new weakness or numbness on one side of the body
- New or different slurred speech or new language difficulty
- New vision problems
- Sudden lethargy or drowsiness
- Seizure
- CHOP INTEND, PDMS-2 \& PEDI-CAT by delegated personnel.
- Investigational product administration by delegated study personnel. HB-adMSCs should only be administered intravenously, with vital sign monitoring of two hours.
- Assess the incidence of any adverse event.
- Twenty-four hours after administration of the investigational product, study participants' parents or guardians will be contacted by telephone call to assess the incidence of adverse events.
- Infusion 2 through Infusion 13.
The following assessments are necessary during these visits:
- Update medical history and concomitant medications if any change occurred since the last visit.
- Measure vital signs, including respiratory rate, body temperature, blood pressure, pulse rate, oxygen saturation, and weight measurement.
- Physical examination by Principal Investigator. As this 2-year-old is unable to walk or hold his head up without physical support, assessment for neurologic sequelae will include the following observations and discharge instructions for observations to continue at home by the primary caregivers:
- Unusual /new weakness or numbness on one side of the body
- New or different slurred speech or new language difficulty
- New vision problems
- Sudden lethargy or drowsiness
- Seizure
- CHOP INTEND, PDMS-2 \& PEDI-CAT by delegated personnel (at Inf. 1, 7, and EOS).
- Coagulation panel \& Hematology. - (at Infusions 2,4,7,10, and EOS).
- Inflammatory Markers \& Blood chemistry at Infusions 2, 7 and EOS.
- Investigational product administration by delegated study personnel. HB-adMSCs should only be administered intravenously, with vital sign monitoring of two hours.
- Assess the incidence of any adverse event.
- Twenty-four hours after administration of the investigational product, study participants' parents or guardians will be contacted by telephone call to assess the incidence of adverse events. The child's skin and eyes will be checked for symptoms of yellowing at each visit, and caregivers will be asked whether they have seen any vomiting, nausea, or the subject looking to be more tired than usual. Discharge instructions will include monitoring for these symptoms. Liver enzymes will be assessed at Screening, Infusion 2, 4, 7, 10, and End of Study per-protocol; however, these laboratory samples can be collected more often if the principal investigator indicates.
- Safety Follow Up
The following evaluations will need to be completed during this visit:
- Update medical history and concomitant medications if any change occurred since the last visit.
- Measure vital signs, including respiratory rate, body temperature, blood pressure, pulse rate, oxygen saturation, and weight measurement.
- Physical examination by Principal Investigator. -End of Study Visit
- Update medical history and concomitant medications if any change occurred since the last visit.
- Measure vital signs, including respiratory rate, body temperature, blood pressure, pulse rate, oxygen saturation, and weight measurement.
- Collect laboratory samples, including Comprehensive Metabolic Panel (CMP), Complete Blood Count (CBC), Inflammatory Markers, and Coagulation panel.
- Physical examination by Principal Investigator.
- CHOP INTEND, PDMS-2 \& PEDI-CAT by delegated personnel.
- Being tested
- HB-adMSCs
- Keywords
- CMD, Muscular Dystrophy, Congenital, Stem cells, L-CMD
- Medical subject headings
- Muscular Dystrophy, Congenital, Lmna-Related, Muscular Dystrophies
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
HB-adMSCsBiological
HB-adMSCs (Hope Biosciences autologous adipose-derived mesenchymal stem cells) is manufactured by Hope Biosciences, L.L.C., a biotechnology company headquartered in Sugar Land, Texas.
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted13 Dec 2021
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Other trials for Congenital Muscular Dystrophy Due to Lamin A/C MutationStudies of the same condition, open and under way.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Expanded access
Sponsor and investigators
- Lead sponsor
- Hope Biosciences Research Foundation
- Sponsor type
- Industry (pharma, biotech, devices)
- Responsible party
- Sponsor
- Investigators
- Djamchid Lotfi, MD, Principal investigator, Investigator
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT05154851
- Sponsor's protocol ID
- HBCMD01
- Status last verified
- Sep 2025
- First submitted
- 9 Dec 2021
- Last updated
- 29 Sep 2025
- Results posted
- No
Study at a glance
From the registry record, last updated by the sponsor on 29 Sep 2025. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- An Expanded Access IND to Evaluate the Safety and Efficacy of Autologous HBadMSCs for the Treatment of a Single Pediatric Patient With Congenital Muscular Dystrophy.
- ClinicalTrials.gov ID
- NCT05154851
- Acronym / sponsor ID
- HBCMD01
- Keywords
- CMD, Muscular Dystrophy, Congenital, Stem cells, L-CMD
- Study type
- Expanded access
- Recruitment status
- No Longer Available
- Lead sponsor
- Hope Biosciences Research FoundationIndustry (pharma, biotech, devices)
- First posted
- 13 Dec 2021 (actual)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
This individual patient expanded access IND is requested for a patient diagnosed with LMNA-related congenital muscular dystrophy (L-CMD). In this expanded access, the patient will receive the investigational product through 14 intravenous infusions, followed by Follow-Up visit and an End of Study.
Detailed description
This Expanded Access includes an up to 28 days screening period, a 44-week Treatment Period, and a 52-week Safety Follow-up Period. All periods are associated with evaluations and procedures that must be performed at specific time points.
-Screening
At the Screening Visit (Visit 1), the study's participant information will be collected by delegated personnel to evaluate trial eligibility. The following information is required to determine eligibility:
- Parent Permission before any trial-related activities.
- Collection of demographic information, such as age, race, ethnicity, date of birth, gender, and relevant medical and surgical history.
- Collection of Medical History and concomitant medications, including relevant information about study participants' past and present health.
- Inclusion and Exclusion criteria evaluation.
- Measurement of vital signs includes respiratory rate, body temperature, blood pressure, pulse rate, oxygen saturation, and weight and height measurement.
- Blood chemistry, Coagulation panel, Inflammatory Markers, \& Hematology.
- Physical examination by Principal Investigator.
Within 28 days of the Visit 1 - Screening, the principal investigator must decide the participant's eligibility. Once the principal investigator has confirmed the subject's eligibility, the subject will be scheduled to receive Infusion 1.
Infusion 1 - Baseline
The following evaluations will be performed during this visit:
- Update medical history and concomitant medications if any change occurred since the last visit.
- Measure vital signs, including respiratory rate, body temperature, blood pressure, pulse rate, oxygen saturation, and weight measurement.
- Physical examination by Principal Investigator. As this 2-year-old is unable to walk or hold his head up without physical support, assessment for neurologic sequelae will include the following observations and discharge instructions for observations to continue at home by the primary caregivers:
- Unusual /new weakness or numbness on one side of the body
- New or different slurred speech or new language difficulty
- New vision problems
- Sudden lethargy or drowsiness
- Seizure
- CHOP INTEND, PDMS-2 \& PEDI-CAT by delegated personnel.
- Investigational product administration by delegated study personnel. HB-adMSCs should only be administered intravenously, with vital sign monitoring of two hours.
- Assess the incidence of any adverse event.
- Twenty-four hours after administration of the investigational product, study participants' parents or guardians will be contacted by telephone call to assess the incidence of adverse events.
- Infusion 2 through Infusion 13.
The following assessments are necessary during these visits:
- Update medical history and concomitant medications if any change occurred since the last visit.
- Measure vital signs, including respiratory rate, body temperature, blood pressure, pulse rate, oxygen saturation, and weight measurement.
- Physical examination by Principal Investigator. As this 2-year-old is unable to walk or hold his head up without physical support, assessment for neurologic sequelae will include the following observations and discharge instructions for observations to continue at home by the primary caregivers:
- Unusual /new weakness or numbness on one side of the body
- New or different slurred speech or new language difficulty
- New vision problems
- Sudden lethargy or drowsiness
- Seizure
- CHOP INTEND, PDMS-2 \& PEDI-CAT by delegated personnel (at Inf. 1, 7, and EOS).
- Coagulation panel \& Hematology. - (at Infusions 2,4,7,10, and EOS).
- Inflammatory Markers \& Blood chemistry at Infusions 2, 7 and EOS.
- Investigational product administration by delegated study personnel. HB-adMSCs should only be administered intravenously, with vital sign monitoring of two hours.
- Assess the incidence of any adverse event.
- Twenty-four hours after administration of the investigational product, study participants' parents or guardians will be contacted by telephone call to assess the incidence of adverse events. The child's skin and eyes will be checked for symptoms of yellowing at each visit, and caregivers will be asked whether they have seen any vomiting, nausea, or the subject looking to be more tired than usual. Discharge instructions will include monitoring for these symptoms. Liver enzymes will be assessed at Screening, Infusion 2, 4, 7, 10, and End of Study per-protocol; however, these laboratory samples can be collected more often if the principal investigator indicates.
- Safety Follow Up
The following evaluations will need to be completed during this visit:
- Update medical history and concomitant medications if any change occurred since the last visit.
- Measure vital signs, including respiratory rate, body temperature, blood pressure, pulse rate, oxygen saturation, and weight measurement.
- Physical examination by Principal Investigator. -End of Study Visit
- Update medical history and concomitant medications if any change occurred since the last visit.
- Measure vital signs, including respiratory rate, body temperature, blood pressure, pulse rate, oxygen saturation, and weight measurement.
- Collect laboratory samples, including Comprehensive Metabolic Panel (CMP), Complete Blood Count (CBC), Inflammatory Markers, and Coagulation panel.
- Physical examination by Principal Investigator.
- CHOP INTEND, PDMS-2 \& PEDI-CAT by delegated personnel.
Study design
Who may qualify
- Sex
- All
- Age groups
- Child, Adult, Older adult
Key inclusion criteria (2 listed)
- Subject diagnosed with LCMNA congenital muscular dystrophy.
- Subject must have banked his stem cells at Hope Biosciences LLC.
Key exclusion criteria (2 listed)
- Subject has any active infection requiring medications.
- The subject has any known coagulation anomalies.
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Interventions
| Intervention | Type | Arms |
|---|---|---|
| HB-adMSCsHB-adMSCs (Hope Biosciences autologous adipose-derived mesenchymal stem cells) is manufactured by Hope Biosciences, L.L.C., a biotechnology company headquartered in Sugar Land, Texas. | Biological | – |
Primary outcome
Not reported in the source record.
Results and safety
Results are not available in the source record.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 29 Sep 2025.
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Recruiting
Modifying Factors in Striated Muscle Laminopathies
Laminopathies, Emery Dreifuss Muscular Dystrophy 2
Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part. This study is not recruiting at the moment.
Djamchid Lotfi, MD principal investigator
Investigator
1 site in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
A study testing HB-adMSCs in people with Congenital Muscular Dystrophy Due to Lamin A/C Mutation, run by Hope Biosciences Research Foundation at 1 site in United States.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 2 inclusion and 2 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: status not confirmed, as of the sponsor's last update on 29 Sep 2025. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 1 site in United States. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
Results are not available in the source record.
How can a doctor refer a patient or contact the research team?
The record lists no contact. The official record names the sponsor, who can be asked directly. AzTrials does not enrol participants or take referrals.
Where can I read the original study information?
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 29 Sep 2025.