Actively Recruiting

Age: 5Years +
All Genders
NCT01694953

The Natural History Study of Mitochondrial NeuroGastroIntestinal Encephalopathy (MNGIE)

Led by Columbia University · Updated on 2025-04-17

20

Participants Needed

1

Research Sites

721 weeks

Total Duration

On this page

Sponsors

C

Columbia University

Lead Sponsor

N

National Institute of Neurological Disorders and Stroke (NINDS)

Collaborating Sponsor

AI-Summary

What this Trial Is About

This is a multi-center natural history study of Mitochondrial NeurogastroIntestinal Encephalopathy (MNGIE). Patients will be followed over time to assess clinical symptoms. The investigators hope to learn more about the disease of MNGIE as well as develop useful measures of disease status for use in future clinical trials. Additional clinical centers will be listed as they become available.

CONDITIONS

Official Title

The Natural History Study of Mitochondrial NeuroGastroIntestinal Encephalopathy (MNGIE)

Who Can Participate

Age: 5Years +
All Genders

Eligibility Criteria

Eligible

You may qualify if you...

  • Thymidine Phosphorylase (TP) defect confirmed by homozygous or compound heterozygous mutations in the TYMP gene and/or TP enzyme activity less than 20% of normal
  • Increased plasma thymidine (Thd) levels greater than 3 micromole/L
  • Increased plasma deoxyuridine (dUrd) levels greater than 7.5 micromole/L
  • Participant is at least 5 years old
Not Eligible

You will not qualify if you...

  • Participation in another interventional study within 1 month prior to this study
  • Unable to travel to the research site for visits
  • Unwillingness to sign the informed consent form
  • Substance abuse

AI-Screening

AI-Powered Screening

Complete this quick 3-step screening to check your eligibility

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Trial Site Locations

Total: 1 location

1

Columbia University

New York, New York, United States, 10032

Actively Recruiting

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Research Team

K

Kris Engelstad, MS

CONTACT

How is the study designed?

Study Type

OBSERVATIONAL

Masking

N/A

Allocation

N/A

Model

N/A

Primary Purpose

N/A

Number of Arms

1

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