Ataxia-Telangiectasia (A-T)NCT02246491
Cell-Based Approaches For Modeling and Treating Ataxia-Telangiectasia
A study testing A-T iPS cell line and Carrier patients iPS cell line in people with Ataxia-Telangiectasia (A-T), run by Johns Hopkins University at 1 site in United States.
Trial summary
This research is being done to better understand the causes of the disease Ataxia-Telangiectasia and, in the longer-term, develop new therapies for the disease using stem cells. Induced pluripotent stem cells (iPSC) are a type of cells that can be made in the laboratory from cells in your body, such as blood cells or… Read more about this study
- Who is it for?
- Ages 3 to 100 years
- Conditions the study is for
- Ataxia-Telangiectasia (A-T)
- What is being tested?
- A-T iPS cell line and Carrier patients iPS cell line
- Could I receive a placebo?
- No, everyone receives an active treatment
- How many people
- 6 participants
- Where
- 1 siteUnited States
- Study dates
- 3 Feb 2015to 5 Jul 2018
- Phase
- Interventional
- 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 3 to 100 years
- All sexes
- No healthy volunteers
- Child, Adult, Older adult
Who may be able to join
- Patients that meet the classic diagnosis of A-T and for whom the underlying mutation(s) is known. The diagnosis of A-T has been made by the clinician using the following criteria:
- Characteristic neurological abnormalities, including but not limited to oculomotor apraxia, bulbar dysfunction, postural instability, and ataxia.
- Presence of telangiectasia on the conjunctivae and/or skin.
- Laboratory abnormalities including but not limited to elevated serum alpha-feto- protein, level, absence of ATM on western blot, increased x-ray induced chromosomal breakage in comparison to a control population, mutations in both alleles of the ATM gene. Parents of the patients above, who are haploinsufficient and whose mutation is known.
Who cannot join
- Patients under 2 years of age No subjects will be excluded on the basis of age, sex, race, or socio-economic status.
Trial locations and contacts
1 site in 1 country.
About this study
Official title: Induced Pluripotent Stem (iPS) Cell-Based Approaches For Modeling and Treating Ataxia-Telangiectasia
This research is being done to better understand the causes of the disease Ataxia-Telangiectasia and, in the longer-term, develop new therapies for the disease using stem cells.
Induced pluripotent stem cells (iPSC) are a type of cells that can be made in the laboratory from cells in your body, such as blood cells or skin cells (fibroblasts). These stem cells can then be used for research purposes. For example, stem cells can be used to investigate how the mutation in ATM causes the actual symptoms of Ataxia-Telangiectasia. In addition, the stem cells can be used to screen for drugs that could be helpful to treat the disease or to develop new laboratory techniques to correct the mutation that causes Ataxia-Telangiectasia. where the mutation that causes the disease is corrected by the investigators. The stem cells generated in this study will not be used directly for patient therapy and therefore this research does not have a direct benefit to you. However, it will help advance our understanding of the disease and develop future therapies.
Patients who enroll in this study will get all of the standard therapy they would get for their tumor whether or not they participate in this study. There is no extra or different therapy given. The study involves a one-time procedure (either blood collection or skin biopsy).
Read the detailed description
Ataxia-Telangiectasia (A-T) is a devastating genetic syndrome of neurodegeneration, immunodeficiency and cancer predisposition caused by mutations in the locus encoding ATM (Ataxia-Telangiectasia Mutated). The current standard of care for A-T consists of aggressive supportive measures, and the prognosis remains poor. There is therefore a pressing need to develop novel experimental approaches and treatments for this disease. In this application, we propose to address this need by developing for the first time human stem cell-based technologies to: 1) generate novel experimental models for A-T that faithfully recapitulate the features of the disease across its complex spectrum of clinical manifestations (Aim 1); and 2) start to test the feasibility of regenerative therapies for A-T, via generation of autologous stem cells that have been rendered disease-free by correction of the mutation (Aim 2). Mutations causing A-T are private, resulting in variable reduction in ATM activity and, correspondingly, a wide spectrum of clinical manifestations. Although the most severe form of the disease ("classical" A-T, with no detectable ATM) has been modeled in the mouse (ATM "knock out"), this approach fails to recapitulate the neurological symptoms of the disease and its characteristic tumor spectrum. Moreover, we are currently lacking experimental models for those patients whose mutations result in reduced ATM activity ("variant" A-T). To address these issues, experiments in Aim 1 will test the hypothesis that the genotype-phenotype correlation in A-T is maintained in patient-derived induced pluripotent stem cells (iPSCs). To test this hypothesis, we will reprogram fibroblasts from A-T patients with variable reduction of ATM levels and determine whether: 1) ATM expression and activity in the iPSCs correlate directly with those observed in the patient fibroblasts they are derived from; 2) the iPSCs recapitulate the phenotypes observed in the fibroblasts, including impaired cell cycle checkpoint activation, defective DNA double-strand break (DSB) repair, radiosensitivity and genomic instability; and 3) these phenotypes in the iPSCs directly correlate with their level of ATM expression/activity. If we find that the genotype-phenotype correlation is maintained in A-T iPSCs, this work would validate a more general use of autologous iPSCs for preclinical studies of A-T, including the evaluation of disease biomarkers, drug testing or genetic screening. The clinical manifestations of A-T result from progressive cell loss and tissue degeneration, making A-T a candidate disease for regenerative therapies. Experiments in Aim 2 will test the hypothesis that correction of the ATM mutation in A-T somatic cells will rescue their severe reprogramming defect and allow the generation of disease-free iPSCs. To test this hypothesis, we propose a series of proof-of-principle experiments using a well-characterized compound heterozygous A-T fibroblast cell line. First, we will "repair" either one or the two ATM mutations in this line by recombination with an exogenous donor plasmid carrying the intact sequence, to generate either "carriers" (one normal allele and one mutated allele) or "intact" cells (two normal alleles). To increase the efficiency of recombination, we will introduce a DSB in close proximity to the mutation using Transcription Activator-Like Effector Nucleases (TALENS) that bind specifically to the mutated region. In Preliminary Experiments, we find that we can successfully induce DSBs and site-specific recombination at a human "safe harbor" locus as well as at the ATM locus itself. After verifying that recombination restores ATM expression and function, we will reprogram the corrected cells into iPSCs and characterize their level of ATM expression, activity and function with passage. Because the "null", "carrier" and "intact" lines are isogenic, the effect of ATM gene dose on reprogramming and iPSC function can be evaluated in these experiments. In this regard, approximately 1% of the US general population is an A-T "carrier", extending the significance of this work well beyond A-T patients. Overall, completion of this Exploratory Project will provide the rationale, expertise and reagents for longer-term studies aimed at modeling and treating A-T with autologous iPSCs and/or their derived products and optimizing the use of regenerative therapies for the general population.
- Conditions
- Ataxia-Telangiectasia (A-T)
- Being tested
- A-T iPS cell line, Carrier patients iPS cell line
- Medical subject headings
- Ataxia Telangiectasia
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
A-T iPS cell lineOther
Reprogramming A-T patients iPS cell line
Carrier patients iPS cell lineOther
Reprogramming iPS cell line from carrier patients
| Study group | Role | What they receive |
|---|---|---|
| iPSCs without gene correction | Other | This is not a clinical trial and there is no immediate benefit to the participants. At this time, iPSCs and their derived products are not suitable for administration to patients. However, they are useful for basic and preclinical studies of the disease, such as mechanistic studies of ATM function or screening for small molecules with therapeutic value. As regenerative medicine continues to advance, iPSCs and their products may ultimately be used for clinical studies aimed at replacing damaged tissues in A-T patients. Receives: Other: Carrier patients iPS cell line |
| iPSCs with gene correction | Other | This is not a clinical trial and there is no immediate benefit to the participants. At this time, iPSCs and their derived products are not suitable for administration to patients. However, they are useful for basic and preclinical studies of the disease, such as mechanistic studies of ATM function or screening for small molecules with therapeutic value. As regenerative medicine continues to advance, iPSCs and their products may ultimately be used for clinical studies aimed at replacing damaged tissues in A-T patients. Receives: Other: A-T iPS cell line |
What is being measured
The primary outcome is the main question the study is designed to answer.
Number of samples of primary A-T fibroblast samples that can be successfully reprogrammed to iPSCs
Fibroblasts from patients with A-T will be collected for eligible, consenting participants and processed for reprogramming and iPSC analysis in the laboratory
Measured: 2 years
Secondary outcomes (2)
Number of samples of patient A-T fibroblasts that can be reprogrammed to iPSCs with and without gene correction
The ATM mutation in patient A-T fibroblasts will be corrected using guided nucleases and the reprogramming efficiency of isogenic corrected and uncorrected fibroblasts will be quantified using standard molecular assays.
Measured: 2 years
Quantification of the cloning efficiency of primary cells haploinsufficient for ATM relative to healthy controls
Fibroblasts from individuals heterozygous for an ATM null mutation will be reprogrammed according to standard protocols and the number of iPSC colonies will be compared to those of healthy controls reprogrammed in parallel.
Measured: 2 years
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted22 Sep 2014 (estimated)
- Study start3 Feb 2015
- Primary completion5 Jul 2018
- Study completion5 Jul 2018
Why it stopped: Change in research objectives.
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Other trials for Ataxia-Telangiectasia (A-T)Studies of the same condition, open and under way.
- More trials run by Johns Hopkins UniversityThe sponsor's other registered studies.
- 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
- Interventional
- Phase
- Phase N/A
- Primary purpose
- Basic science
- Allocation
- Non-randomised
- Intervention model
- Single group
- Masking
- None (open label)
- Enrolment
- 6 participants (actual)
Sponsor and investigators
- Lead sponsor
- Johns Hopkins University
- Sponsor type
- University, hospital or other
- Responsible party
- Sponsor
- Investigators
- Sonia Franco, M.D., Principal investigator, SKCCC at Johns Hopkins
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT02246491
- Sponsor's protocol ID
- IRB00038916
- Other IDs
- J1491
- Status last verified
- Mar 2019
- First submitted
- 18 Sep 2014
- Last updated
- 19 Mar 2019
- Results posted
- No
- Data monitoring committee
- Yes
- FDA-regulated drug
- No
- FDA-regulated device
- No
Study at a glance
From the registry record, last updated by the sponsor on 19 Mar 2019. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Induced Pluripotent Stem (iPS) Cell-Based Approaches For Modeling and Treating Ataxia-Telangiectasia
- ClinicalTrials.gov ID
- NCT02246491
- Acronym / sponsor ID
- IRB00038916
- Conditions
- Ataxia-Telangiectasia (A-T)
- Study type
- Interventional
- Recruitment status
- TerminatedReason stopped: Change in research objectives.
- Enrolment
- 6 participants (actual)
- Lead sponsor
- Johns Hopkins UniversityUniversity, hospital or other
- Study start
- 3 Feb 2015 (actual)
- Primary completion
- 5 Jul 2018 (actual)
- Study completion
- 5 Jul 2018 (actual)
- First posted
- 22 Sep 2014 (estimated)
- 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 research is being done to better understand the causes of the disease Ataxia-Telangiectasia and, in the longer-term, develop new therapies for the disease using stem cells.
Induced pluripotent stem cells (iPSC) are a type of cells that can be made in the laboratory from cells in your body, such as blood cells or skin cells (fibroblasts). These stem cells can then be used for research purposes. For example, stem cells can be used to investigate how the mutation in ATM causes the actual symptoms of Ataxia-Telangiectasia. In addition, the stem cells can be used to screen for drugs that could be helpful to treat the disease or to develop new laboratory techniques to correct the mutation that causes Ataxia-Telangiectasia. where the mutation that causes the disease is corrected by the investigators. The stem cells generated in this study will not be used directly for patient therapy and therefore this research does not have a direct benefit to you. However, it will help advance our understanding of the disease and develop future therapies.
Patients who enroll in this study will get all of the standard therapy they would get for their tumor whether or not they participate in this study. There is no extra or different therapy given. The study involves a one-time procedure (either blood collection or skin biopsy).
Detailed description
Ataxia-Telangiectasia (A-T) is a devastating genetic syndrome of neurodegeneration, immunodeficiency and cancer predisposition caused by mutations in the locus encoding ATM (Ataxia-Telangiectasia Mutated). The current standard of care for A-T consists of aggressive supportive measures, and the prognosis remains poor. There is therefore a pressing need to develop novel experimental approaches and treatments for this disease. In this application, we propose to address this need by developing for the first time human stem cell-based technologies to: 1) generate novel experimental models for A-T that faithfully recapitulate the features of the disease across its complex spectrum of clinical manifestations (Aim 1); and 2) start to test the feasibility of regenerative therapies for A-T, via generation of autologous stem cells that have been rendered disease-free by correction of the mutation (Aim 2). Mutations causing A-T are private, resulting in variable reduction in ATM activity and, correspondingly, a wide spectrum of clinical manifestations. Although the most severe form of the disease ("classical" A-T, with no detectable ATM) has been modeled in the mouse (ATM "knock out"), this approach fails to recapitulate the neurological symptoms of the disease and its characteristic tumor spectrum. Moreover, we are currently lacking experimental models for those patients whose mutations result in reduced ATM activity ("variant" A-T). To address these issues, experiments in Aim 1 will test the hypothesis that the genotype-phenotype correlation in A-T is maintained in patient-derived induced pluripotent stem cells (iPSCs). To test this hypothesis, we will reprogram fibroblasts from A-T patients with variable reduction of ATM levels and determine whether: 1) ATM expression and activity in the iPSCs correlate directly with those observed in the patient fibroblasts they are derived from; 2) the iPSCs recapitulate the phenotypes observed in the fibroblasts, including impaired cell cycle checkpoint activation, defective DNA double-strand break (DSB) repair, radiosensitivity and genomic instability; and 3) these phenotypes in the iPSCs directly correlate with their level of ATM expression/activity. If we find that the genotype-phenotype correlation is maintained in A-T iPSCs, this work would validate a more general use of autologous iPSCs for preclinical studies of A-T, including the evaluation of disease biomarkers, drug testing or genetic screening. The clinical manifestations of A-T result from progressive cell loss and tissue degeneration, making A-T a candidate disease for regenerative therapies. Experiments in Aim 2 will test the hypothesis that correction of the ATM mutation in A-T somatic cells will rescue their severe reprogramming defect and allow the generation of disease-free iPSCs. To test this hypothesis, we propose a series of proof-of-principle experiments using a well-characterized compound heterozygous A-T fibroblast cell line. First, we will "repair" either one or the two ATM mutations in this line by recombination with an exogenous donor plasmid carrying the intact sequence, to generate either "carriers" (one normal allele and one mutated allele) or "intact" cells (two normal alleles). To increase the efficiency of recombination, we will introduce a DSB in close proximity to the mutation using Transcription Activator-Like Effector Nucleases (TALENS) that bind specifically to the mutated region. In Preliminary Experiments, we find that we can successfully induce DSBs and site-specific recombination at a human "safe harbor" locus as well as at the ATM locus itself. After verifying that recombination restores ATM expression and function, we will reprogram the corrected cells into iPSCs and characterize their level of ATM expression, activity and function with passage. Because the "null", "carrier" and "intact" lines are isogenic, the effect of ATM gene dose on reprogramming and iPSC function can be evaluated in these experiments. In this regard, approximately 1% of the US general population is an A-T "carrier", extending the significance of this work well beyond A-T patients. Overall, completion of this Exploratory Project will provide the rationale, expertise and reagents for longer-term studies aimed at modeling and treating A-T with autologous iPSCs and/or their derived products and optimizing the use of regenerative therapies for the general population.
Study design
- Primary purpose
- Basic science
- Allocation
- Non-randomised
- Intervention model
- Single group
- Masking
- None (open label)
- Number of arms
- 2
| Arm | Type | Receives |
|---|---|---|
| iPSCs without gene correction | Other | Other: Carrier patients iPS cell lineThis is not a clinical trial and there is no immediate benefit to the participants. At this time, iPSCs and their derived products are not suitable for administration to patients. However, they are useful for basic and preclinical studies of the disease, such as mechanistic studies of ATM function or screening for small molecules with therapeutic value. As regenerative medicine continues to advance, iPSCs and their products may ultimately be used for clinical studies aimed at replacing damaged tissues in A-T patients. |
| iPSCs with gene correction | Other | Other: A-T iPS cell lineThis is not a clinical trial and there is no immediate benefit to the participants. At this time, iPSCs and their derived products are not suitable for administration to patients. However, they are useful for basic and preclinical studies of the disease, such as mechanistic studies of ATM function or screening for small molecules with therapeutic value. As regenerative medicine continues to advance, iPSCs and their products may ultimately be used for clinical studies aimed at replacing damaged tissues in A-T patients. |
Who may qualify
- Ages
- 3 to 100 years
- Sex
- All
- Healthy volunteers
- Not accepted
- Age groups
- Child, Adult, Older adult
Key inclusion criteria (4 listed)
- Patients that meet the classic diagnosis of A-T and for whom the underlying mutation(s) is known. The diagnosis of A-T has been made by the clinician using the following criteria:
- Characteristic neurological abnormalities, including but not limited to oculomotor apraxia, bulbar dysfunction, postural instability, and ataxia.
- Presence of telangiectasia on the conjunctivae and/or skin.
- Laboratory abnormalities including but not limited to elevated serum alpha-feto- protein, level, absence of ATM on western blot, increased x-ray induced chromosomal breakage in comparison to a control population, mutations in both alleles of the ATM gene. Parents of the patients above, who are haploinsufficient and whose mutation is known.
Key exclusion criteria (1 listed)
- Patients under 2 years of age No subjects will be excluded on the basis of age, sex, race, or socio-economic status.
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 |
|---|---|---|
| A-T iPS cell lineReprogramming A-T patients iPS cell line | Other | iPSCs with gene correction |
| Carrier patients iPS cell lineReprogramming iPS cell line from carrier patients | Other | iPSCs without gene correction |
Primary outcome
Number of samples of primary A-T fibroblast samples that can be successfully reprogrammed to iPSCs
Time frame: 2 years
Fibroblasts from patients with A-T will be collected for eligible, consenting participants and processed for reprogramming and iPSC analysis in the laboratory
2 secondary outcomes
Number of samples of patient A-T fibroblasts that can be reprogrammed to iPSCs with and without gene correction
Time frame: 2 years
Quantification of the cloning efficiency of primary cells haploinsufficient for ATM relative to healthy controls
Time frame: 2 years
Results and safety
The study was stopped early (reason given: Change in research objectives.). Results are not available in the source record.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 19 Mar 2019.
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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.
Sonia Franco, M.D. principal investigator
SKCCC at Johns Hopkins
1 site in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
A study testing A-T iPS cell line and Carrier patients iPS cell line in people with Ataxia-Telangiectasia (A-T), run by Johns Hopkins University 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 4 inclusion and 1 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: stopped early, as of the sponsor's last update on 19 Mar 2019. 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?
The study was stopped early (reason given: Change in research objectives.). 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.
What does the primary outcome measure?
Number of samples of primary A-T fibroblast samples that can be successfully reprogrammed to iPSCs (time frame: 2 years). It is what the study was designed to measure, not a finding.
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 19 Mar 2019; AzTrials last refreshed its copy on 1 Nov 2026.