Long Term Follow-up on Menkes Disease Patients

Running, not enrolling

Conditions studied: Menkes Disease

In brief

This study will collect long term follow-up data regarding overall survival and neurological parameters from patients previously identified and/or enrolled in Protocols 09-CH-0059 and 90-CH0149 and Historical Control data on Menkes disease patients.

Key facts

Study ID

NCT04337684

Run by

Sentynl Therapeutics, Inc.

People needed

50

Starts

2019-12-01

Expected to finish

2026-08-31

Last updated by the study team

2026-03-02

Who can join

Age: any. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• The subject must have been previously identified and/or enrolled under Protocols 09-CH-0059 or 90-CH-0149; or An untreated Menkes disease patients for whom data collection is incomplete under Protocols 09-CH-0059 (Amendment M); or Other untreated Menkes disease patients.
• Must sign and date an informed consent form by parent or legal guardian for this study prior to any assessment being done in this study. If the patient is > 18 years of age, the patient must sign the informed consent.
• Male or female, aged 0 to < 65 years of age.

You may not qualify if…

• Unwillingness/unable to participate in the study.

Where it is running

• Sentynl Therapeutics — Solana Beach, California, United States

Full record on ClinicalTrials.gov

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