Protocol summary

Summary
1) Objectives: Currently there is no treatment for Werdnig Hoffman patients. Stem cell transplantation is a strategy that is actively ongoing in research and development to protect neurons. Non-neural cells could be used to prevent the death of motor neurons. Some studies on hematopoietic stem cells, microglia cells and mesenchymal stem cells (MSC) by injection into Cerebro-Spinal Fluid (CSF) have considered effective in protecting motor neurons. So perhaps the only way for such patients depends on using stem cells that could deliver trophic factors to the dying cells. 2) Design: In this study we will discuss a non-randomize trial for the efficiency of MSCs on the possible phenotypic changes in Werdnig Hoffman patients. 3) Setting & Conduct: Processing of adipose tissue and isolation of MSCs under GMP condition, Proliferation of MSCs, Conducting quality control tests, Performing electromyogram (EMG) before any injection, The first injection of MSCs via intrathecal route at the dose of 1 million cells, The second injection after 2 weeks at the dose of 3 million cells, The third injection after 4 weeks at the dose of 5 million cells, Sampling of CSF to detect the injected cells, EMG again after the last intervention; 4) Participant including major eligibility criteria: Inclusion criteria: Age under 12 month; Weak muscle tone; Patient sit is not fully nerve guided; Existence of home senses; Normal brain function; Exclusion criteria: Age up to 12 month; Other types of spinal muscular atrophies; Patient with sensory loss; Brain abnormalities; 5) Intervention: Overall 10 patients will be enrolled, of which 5 patients will be injected with MSCs; Allogeneic adipose derived MSCs will be injected (3 times) intrathecally, Sampling from CSF to detect the injected cells; 6) Main outcome measures: Improve in disease phenotype, Probable increased longevity.

General information

Acronym
IRCT registration information
IRCT registration number: IRCT2015073023417N1
Registration date: 2015-09-12, 1394/06/21
Registration timing: prospective

Last update:
Update count: 0
Registration date
2015-09-12, 1394/06/21
Registrant information
Name
Amir Ali Hamidieh
Name of organization / entity
Tehran University of Medical Sciences
Country
Iran (Islamic Republic of)
Phone
+98 21 8353 2371
Email address
aahamidieh@tums.ac.ir
Recruitment status
Recruitment complete
Funding source
Vice Chancellor for Research, Tehran University of Medical Sciences ; Iranian council for development of Stem cell sciences & Technologies, Vice presidency for Science and Technology
Expected recruitment start date
2015-09-23, 1394/07/01
Expected recruitment end date
2016-05-21, 1395/03/01
Actual recruitment start date
empty
Actual recruitment end date
empty
Trial completion date
empty
Scientific title
The effectivness of allogeneic Adipose derived mesenchymal stem cells on the phenotypic changes of Werdnig Hoffman patients
Public title
The efficiency of Cell therapy for Werdnig Hoffman patients
Purpose
Treatment
Inclusion/Exclusion criteria
Inclusion criteria: Age under 12 month; Weak muscle tone; Weakness in mobility; Patients sitting without full conduction of nerve; Existence of home senses; Normal Brain function; Exclusion criteria: Age beyound 12 month; Brain abnormality; Loss of sensory functions; Malignancies.
Age
From 6 months old to 1 year old
Gender
Both
Phase
2
Groups that have been masked
No information
Sample size
Target sample size: 10
Randomization (investigator's opinion)
N/A
Randomization description
Blinding (investigator's opinion)
Not blinded
Blinding description
Placebo
Not used
Assignment
Parallel
Other design features

Secondary Ids

empty

Ethics committees

1

Ethics committee
Name of ethics committee
Ethics committee of Tehran University of Medical Sciences
Street address
6th Floor, Central Organization of University, Qods Ave, Keshavarz Blvd, Tel. +982188987381
City
Tehran
Postal code
Approval date
2015-08-17, 1394/05/26
Ethics committee reference number
IR.TUMS.REC.1394.607

Health conditions studied

1

Description of health condition studied
Werdnig Hoffman
ICD-10 code
G12
ICD-10 code description
Infantile spinal muscular atrophy, type I [Werdnig-Hoffman]

Primary outcomes

1

Description
Muscle Tone
Timepoint
Before intervention, 3 month after final intervention
Method of measurement
Electromyogram (EMG)

Secondary outcomes

1

Description
Change in patients muscle tone
Timepoint
Immediately after intervention
Method of measurement
Electromyogram

2

Description
Existence of injected cells
Timepoint
After final intervention
Method of measurement
Spinal cord fluid sampling

3

Description
Sensitivity or infection
Timepoint
After intervention
Method of measurement
Direct observation

4

Description
Patients Longevity
Timepoint
After the final intervention
Method of measurement
Direct observation

Intervention groups

1

Description
In the intervention group that comprises of 5 patients: After genetical confirmation of disease and the electromyogram test, there will be intrathecal injections of mesenchymal stem cells at 3 doses after 2 weeks interval. Dose escalation will be 2, 5 and 10 million allogeneic adipose derived mesenchymal stem cells in order. After the last injection of stem cells there will be an electromyogram confirmation test.
Category
Treatment - Other

2

Description
In the control group that comprises of 5 patients: There will be no injection. The only intervention will be the electromyogram tests at the same time with intervention group.
Category
Other

Recruitment centers

1

Recruitment center
Name of recruitment center
Children Medical Center
Full name of responsible person
Mahmoudreza Ashrafi
Street address
No 62, Neurology department, Children Medical Center, Near Imam Khomeini Hospital, Dr Gharib Ave, Keshavarz Blvd
City
Tehran

Sponsors / Funding sources

1

Sponsor
Name of organization / entity
Vice chancellor for research, Tehran University of Medical Sciences
Full name of responsible person
Dr. Masoud Younesian
Street address
Central Organization of University, Qods Ave, Keshavarz Blvd
City
Tehran
Grant name
Grant code / Reference number
28524
Is the source of funding the same sponsor organization/entity?
Yes
Title of funding source
Vice chancellor for research, Tehran University of Medical Sciences
Proportion provided by this source
Public or private sector
empty
Domestic or foreign origin
empty
Category of foreign source of funding
empty
Country of origin
Type of organization providing the funding
empty

2

Sponsor
Name of organization / entity
Vice Presidency for Science and Technology
Full name of responsible person
Dr. Ramin Heshmat
Street address
Ladan Alley, Sheikh Bahayi Shomali Ave, Mollasadra Ave
City
Tehran
Grant name
Grant code / Reference number
Is the source of funding the same sponsor organization/entity?
Yes
Title of funding source
Vice Presidency for Science and Technology
Proportion provided by this source
Public or private sector
empty
Domestic or foreign origin
empty
Category of foreign source of funding
empty
Country of origin
Type of organization providing the funding
empty

Person responsible for general inquiries

Contact
Name of organization / entity
School of Advanced Technologies in Medicine, Tehran University of Medical Sciences
Full name of responsible person
Rashin Mohseni
Position
PhD candidate
Other areas of specialty/work
Street address
No 88, School of Advanced Technologies in medicine, Italia St, Qods Ave, Keshavarz Blvd
City
Tehran
Postal code
1417755469
Phone
+98 21 8899 1121
Fax
+98 21 8899 1117
Email
rashin_mohseni@yahoo.com; aahamidieh@tums.ac.ir
Web page address
http://samt.tums.ac.ir

Person responsible for scientific inquiries

Contact
Name of organization / entity
Tehran University of Medical Sciences
Full name of responsible person
Mahmoud Reza Ashrafi
Position
Professor of Pediatrics Neurology
Other areas of specialty/work
Street address
No 62, Children Medical Center, Besides Imam Khomeini Hospital, Gharib Ave, Keshavarz blvd
City
Tehran
Postal code
Phone
+98 21 6693 5848
Fax
Email
ashrafi@tums.ac.ir; mr_ashrafi@yahoo.com
Web page address
http://chmc.tums.ac.ir

Person responsible for updating data

Contact
Name of organization / entity
School of Advanced Technologies in Medicine, Tehran University of Medical Sciences
Full name of responsible person
Rashin Mohseni
Position
PhD Candidate
Other areas of specialty/work
Street address
No 88, Italia St., Qods Ave., Keshavarz Blvd.
City
Tehran
Postal code
1417755469
Phone
+98 21 8899 1121
Fax
+98 21 8899 1117
Email
rashin_mohseni@yahoo.com; aahamidieh@tums.ac.ir
Web page address
http://samt.tums.ac.ir

Sharing plan

Deidentified Individual Participant Data Set (IPD)
empty
Study Protocol
empty
Statistical Analysis Plan
empty
Informed Consent Form
empty
Clinical Study Report
empty
Analytic Code
empty
Data Dictionary
empty
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