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NCT07572825 · Eva Morava-Kozicz

Assessing the Safety and Tolerability of NMN in DHDDS-CDG

What this study is about

The primary objective of this study is to evaluate the safety and how well patients handle the treatment of the dietary supplement, nicotinamide mononucleotide (NMN), in individuals with dehydrodolichol diphosphate synthase congenital disorder of glycosylation (DHDDS-CDG).

View original scientific description

The primary objective of this study is to evaluate the safety and tolerability of the dietary supplement, nicotinamide mononucleotide (NMN), in individuals with dehydrodolichol diphosphate synthase congenital disorder of glycosylation (DHDDS-CDG). This will to contribute to knowledge that will allow healthcare providers to make informed decisions about recommending this dietary supplement in this population.

Interventions

DRUG

Nicotinamide Mononucleotide (NMN) Nucleosidase

Name: nicotinamide mononucleotide (NMN) Form: measured powder Dose: 250 mg/day Frequency: Daily Route of administration: Oral

Primary outcome measures

Incidence of adverse events (AEs)

Time frame: up to 12 months

Incidence of AEs will be collected throughout the treatment period and optional long-term safety follow up period.

Who can participate

This study lists these criteria on ClinicalTrials.gov. A study coordinator reviews eligibility during screening — this page does not determine whether you qualify.

Inclusion criteria

  • Subject is ≥ 4 years old
  • Subject has biologically and genetically proven heterozygous DHDDS-CDG.
  • Subject/legally authorized representative (LAR) is able to understand and provide written informed consent, and assent (as applicable) to participate in this study.

Exclusion criteria

  • Subject has intellectual disability with IQ\<52 (moderate or lower IQ intellectual disability).
  • In the site Principal Investigator's opinion, subject has a history of intolerance to NMN or other niacin metabolite supplement that precludes the subject from participation in this study.
  • Subject has any of the following:
  • Liver failure
  • ALT level \>5x ULN
  • AST level \>5x ULN
  • eGFR \< 30 OR creatinine \>180 mmol/L
  • Subject is pregnant.
  • Use of investigational compounds within the previous 6 months or current enrollment in another trial involving investigational compounds.
  • Concomitant use of the following medications that could interact with orally administered NMN:
  • Statins or other cholesterol-lowering drugs
  • In the site Principal Investigator's opinion, subject is not able or willing to comply with the trial requirements.

Where

  • New York, New York

Related conditions & keywords

DHDDS-Congenital Disorder of GlycosylationDHDDS-CDGCongenital Disorder of Glycosylation

Frequently asked questions

What is a clinical trial?

A clinical trial is a research study that tests new medical treatments, drugs, devices, or procedures to determine their safety and effectiveness. Trials are carefully designed and monitored to protect participants while advancing medical knowledge.

Is it safe to participate?

Clinical trials follow strict safety guidelines and ethical standards. Trials must be reviewed and approved, and participants are closely monitored by medical professionals throughout the study. You can withdraw at any time if you choose.

Will I be compensated?

Many clinical trials offer compensation for your time, travel expenses, and inconvenience. The specific compensation varies by study and will be discussed during the screening process. All study-related medical care is typically provided at no cost to participants.

Will I receive a placebo instead of treatment?

When effective treatment exists, participants typically receive either the standard treatment plus the study intervention, or the standard treatment plus placebo. You would not be denied effective care. Placebos are primarily used when no proven treatment is available, or in addition to standard care. Your trial consent form will clearly explain what treatments you may receive.

Can I leave a trial if I change my mind?

Absolutely. Participation in clinical trials is completely voluntary. You have the right to withdraw from the study at any time, for any reason, without penalty or loss of benefits to which you are otherwise entitled.

How long does a clinical trial last?

Trial duration varies widely depending on the study design and purpose. Some trials last just a few weeks, while others may continue for months or years. The study coordinator will provide specific timeline information during your screening call.

Data: ClinicalTrials.gov · synced Jun 22, 2026 · Source of record for eligibility and locations

📊
1 of 8 participants interested
13% interest

See if this study fits

A short prescreen based on this study's listed criteria. A coordinator confirms eligibility — this is not a medical assessment.

Preparing your pre-screening questions…

Study locations

Choose your preferred location, or select flexible during enrollment.

RECRUITING

New York

New York

Location available

Express your interest

Share your contact details and a study coordinator can follow up about screening.

Secure & Confidential

Your information is protected and will only be shared with the research team.

What participation can include

  • Study-related care provided by the research team
  • Close monitoring by medical professionals
  • Possible compensation for time and travel*
  • The option to withdraw at any time
  • Contributing to medical research that may help future patients

*Compensation varies by study. Confirm details with coordinator.

Typical next steps

  1. 1.Submit this form
  2. 2.Phone screening
  3. 3.In-person assessment if eligible
  4. 4.Begin participation

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Looking for DHDDS-Congenital Disorder of Glycosylation Treatment in New York?

Join others in New York exploring innovative treatment options through clinical research

DHDDS-Congenital Disorder of Glycosylation Treatment Options in New York, New York

If you're searching for DHDDS-Congenital Disorder of Glycosylation treatment in New York, participating in a clinical research study may provide access to innovative approaches under expert medical supervision. This study is actively recruiting participants in New York and surrounding areas.

Clinical trials offer participants the opportunity to receive cutting-edge treatments while contributing to medical research that may help future patients with DHDDS-Congenital Disorder of Glycosylation. All study-related care is provided at no cost to participants.

Local Sites
1 locations in New York
Now Enrolling
Up to 8 participants
Quick Start
Screening available now

Why Consider a Clinical Trial for DHDDS-Congenital Disorder of Glycosylation?

Potential Benefits

  • Access to new treatment approaches before public availability
  • Close monitoring by experienced medical professionals
  • Study-related care provided at no cost
  • Contribute to medical research for DHDDS-Congenital Disorder of Glycosylation

What to Expect

  • Initial screening to determine eligibility
  • Regular check-ups and monitoring visits
  • Possible compensation for time and travel
  • You can withdraw at any time

Frequently Asked Questions About This DHDDS-Congenital Disorder of Glycosylation Study

Important Clinical Trial Information

This information is provided for educational purposes and does not constitute medical advice. Clinical trial participation involves potential risks and benefits. Eligibility requirements apply and will be assessed during the screening process.

Study identifier: NCT07572825. For complete study details, visit ClinicalTrials.gov. Always consult with your healthcare provider before making decisions about your medical care or participating in clinical research.