Long-term Follow-up of Participants With Cerebral Adrenoleukodystrophy Who Were Treated With Lenti-D Drug Product

NCT ID: NCT02698579

Last Updated: 2025-02-20

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

ACTIVE_NOT_RECRUITING

Total Enrollment

64 participants

Study Classification

OBSERVATIONAL

Study Start Date

2016-01-22

Study Completion Date

2038-08-31

Brief Summary

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This is a multi-center, long-term safety and efficacy follow-up study for participants with cerebral adrenoleukodystrophy (CALD) who have received Lenti-D Drug Product (eli-cel) in a parent clinical study (Study ALD-102 or Study ALD-104).

After completing a parent clinical study (approximately 2 years), eligible participants will be followed for an additional 13 years for a total of 15 years post-drug product infusion. No investigational drug product will be administered in this study.

Detailed Description

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Conditions

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Cerebral Adrenoleukodystrophy (CALD) Adrenoleukodystrophy (ALD) X-Linked Adrenoleukodystrophy (X-ALD)

Study Design

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Observational Model Type

CASE_ONLY

Study Time Perspective

PROSPECTIVE

Study Groups

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Long-term followup

Participants who have received Lenti-D Drug Product in a parent clinical study (bluebird bio-sponsored clinical studies ALD-102 and ALD-104) and who meet the eligibility criteria for the Study LTF-304 will be followed in this long-term followup study for 13 years (for a total of 15 years of follow-up after drug product infusion in the parent studies).

No interventional drug product utilized in this follow-up study

Intervention Type GENETIC

Participants received a single IV infusion of Lenti-D Drug Product (also known as elivaldogene autotemcel or eli-cel) in either parent Study ALD-102 or ALD-104.

The objectives of this long-term follow-up study are to assess long-term safety and efficacy following completion of participation in parent studies. Vector copy number (VCN) measurement, safety evaluations, disease-specific assessments, and assessments to monitor for long-term complications of autologous transplant are conducted in this study.

Interventions

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No interventional drug product utilized in this follow-up study

Participants received a single IV infusion of Lenti-D Drug Product (also known as elivaldogene autotemcel or eli-cel) in either parent Study ALD-102 or ALD-104.

The objectives of this long-term follow-up study are to assess long-term safety and efficacy following completion of participation in parent studies. Vector copy number (VCN) measurement, safety evaluations, disease-specific assessments, and assessments to monitor for long-term complications of autologous transplant are conducted in this study.

Intervention Type GENETIC

Eligibility Criteria

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Inclusion Criteria

* Provision of written informed consent for this study by the participant or participant's parent(s)/ legal guardian(s) and written informed assent by participant, if applicable
* Have received eli-cel in a parent clinical study
Maximum Eligible Age

19 Years

Eligible Sex

MALE

Accepts Healthy Volunteers

No

Sponsors

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Genetix Biotherapeutics Inc.

INDUSTRY

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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Vinod K Prasad, MD, FRCP

Role: STUDY_DIRECTOR

bluebird bio, Inc.

Locations

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Mattel Children's Hospital-UCLA

Los Angeles, California, United States

Site Status

Lucile Packard Children's Hospital - Stanford

Palo Alto, California, United States

Site Status

Boston Children's Hospital/Massachusetts General Hospital

Boston, Massachusetts, United States

Site Status

University of Minnesota

Minneapolis, Minnesota, United States

Site Status

Instituto Neurogenia

Caba, , Argentina

Site Status

Women's and Children's Hospital

North Adelaide, , Australia

Site Status

Hospital das Clínicas da Universidade de São Paulo

São Paulo, , Brazil

Site Status

Hôpital Bicêtre

Le Kremlin-Bicêtre, Cedex, France

Site Status

Universitätsklinikum Leipzig AöR

Leipzig, , Germany

Site Status

Ospedale Pediatrico Bambino Gesù

Rome, , Italy

Site Status

Prinses Maxima Center

Utrecht, , Netherlands

Site Status

Royal Free London Hospital

London, England, United Kingdom

Site Status

Great Ormond Street Hospital

London, , United Kingdom

Site Status

Countries

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United States Argentina Australia Brazil France Germany Italy Netherlands United Kingdom

References

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Eichler F, Duncan CN, Musolino PL, Lund TC, Gupta AO, De Oliveira S, Thrasher AJ, Aubourg P, Kuhl JS, Loes DJ, Amartino H, Smith N, Folloni Fernandes J, Sevin C, Sankar R, Hussain SA, Gissen P, Dalle JH, Platzbecker U, Downey GF, McNeil E, Demopoulos L, Dietz AC, Thakar HL, Orchard PJ, Williams DA. Lentiviral Gene Therapy for Cerebral Adrenoleukodystrophy. N Engl J Med. 2024 Oct 10;391(14):1302-1312. doi: 10.1056/NEJMoa2400442.

Reference Type DERIVED
PMID: 39383459 (View on PubMed)

Duncan CN, Bledsoe JR, Grzywacz B, Beckman A, Bonner M, Eichler FS, Kuhl JS, Harris MH, Slauson S, Colvin RA, Prasad VK, Downey GF, Pierciey FJ, Kinney MA, Foos M, Lodaya A, Floro N, Parsons G, Dietz AC, Gupta AO, Orchard PJ, Thakar HL, Williams DA. Hematologic Cancer after Gene Therapy for Cerebral Adrenoleukodystrophy. N Engl J Med. 2024 Oct 10;391(14):1287-1301. doi: 10.1056/NEJMoa2405541.

Reference Type DERIVED
PMID: 39383458 (View on PubMed)

Related Links

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https://clinicaltrials.gov/study/NCT01896102

Parent Study ALD-102 protocol registrations and summary result disclosure

https://clinicaltrials.gov/study/NCT03852498

Parent Study ALD-104 protocol registrations and summary result disclosure

Other Identifiers

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2024-513904-33-00

Identifier Type: CTIS

Identifier Source: secondary_id

2015-002805-13

Identifier Type: EUDRACT_NUMBER

Identifier Source: secondary_id

LTF-304

Identifier Type: -

Identifier Source: org_study_id

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