NCT05642221 is a clinical trial in Juvenile Neuronal Ceroid Lipofuscinosis, sponsored by Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD).

What condition does NCT05642221 study?

NCT05642221 studies Juvenile Neuronal Ceroid Lipofuscinosis, Smith-Lemli-Opitz Syndrome, Creatine Transporter Deficiency, Niemann-Pick Disease Type C1.

Is NCT05642221 still recruiting?

NCT05642221 is currently completed. Last updated 8 April 2026.

Last reviewed 2026-04-08 · How we verify

NCT05642221

Name: Drug Landscape Pharmaceutical Database
Creator: Drug Landscape
Published: 2026-01-01
License: https://creativecommons.org/licenses/by/4.0/

Functional Near-Infrared Spectroscopy (fNIRS) Combined With Diffuse Correlation Spectroscopy (DCS) in Neurocognitive Disease as Compared to Healthy Neurotypical Controls

Completed Last updated 8 April 2026

What this trial tests

trial in Juvenile Neuronal Ceroid Lipofuscinosis in 73 participants. Completed in 25 April 2025.

Timeline

23 January 2023

Primary endpoint
10 October 2024

25 April 2025

Quick facts

Lead sponsor	Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
Status	Completed
Study type	OBSERVATIONAL
Enrollment	73
Start date	23 January 2023
Primary completion	10 October 2024
Estimated completion	25 April 2025
Sites	1 location across United States

Conditions studied

Juvenile Neuronal Ceroid Lipofuscinosis — all drugs for Juvenile Neuronal Ceroid Lipofuscinosis →
Smith-Lemli-Opitz Syndrome — all drugs for Smith-Lemli-Opitz Syndrome →
Creatine Transporter Deficiency — all drugs for Creatine Transporter Deficiency →
Niemann-Pick Disease Type C1 — all drugs for Niemann-Pick Disease Type C1 →

Sponsor

Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)

Who can join

Adults 6 Months to 110, any sex, with Juvenile Neuronal Ceroid Lipofuscinosis or Smith-Lemli-Opitz Syndrome. Patients with the condition only — healthy volunteers not accepted.

Sponsor's own description

Background: Neurocognitive disorders affect how the brain uses oxygen. They may affect mental development in children. These disorders can be studied with imaging scans that use radiation; however, these methods are not ideal for research on children. Two technologies-functional near-infrared spectroscopy (fNIRS) and diffuse correlation spectroscopy (DCS)-use light to detect changes in brain activity. These methods are safer, and they can be used in a more relaxed setting. In this natural history study, researchers want to find out whether fNIRS and DCS can be a good way to study people with neurocognitive disorders. Objective: To find out whether fNIRS and DCS can be useful in measuring brain activity in people with neurocognitive disorders. Eligibility: People aged 6 months or older with neurocognitive disorders. These can include Niemann-Pick disease type C1 (NPC1); creatine transporter deficiency (CTD); Smith Lemli Opitz syndrome (SLOS); juvenile neuronal ceroid lipofuscinosis (CLN3 disease); and Pheland-McDermid (PMS) syndrome. Healthy volunteers are also needed. Design: Participants will have a physical exam. They will have tests of their memory and thinking. Participants will sit in a quiet room for the fNIRS and DCS tests. A snug cap (like a cloth swim cap) will be placed on their head. The cap has lights and sensors. Another sensor will be placed on their forehead. Participants will perform tasks on a computer. This testing will take 45 to 60 minutes. The tests will be repeated within 1 to 4 weeks. Participants will be asked to return for repeat tests 1 year later.

Publications & conference data

No peer-reviewed publications indexed yet for this trial. Completed trials usually publish results within 12-18 months.

Verify or expand the search:

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Verify against primary sources

ClinicalTrials.gov — authoritative US registry record
WHO ICTRP — international registry index
EU Clinical Trials Register
Sponsor press releases (Google)

Data sources for this page

Trial protocol + status: ClinicalTrials.gov NCT05642221 (US National Library of Medicine, public domain)
Drug + disease cross-links: matched in real time against Drug Landscape's normalised drug + company + condition tables
Sponsor: as reported to ClinicalTrials.gov by Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
Last refreshed: 8 April 2026

Drug Landscape aggregates and links these public records for informational use only. Always verify against the primary source before clinical or regulatory decisions. Canonical URL: https://druglandscape.com/trial/NCT05642221.

Primary sources · FDA · ClinicalTrials.gov · EMA · SEC EDGAR · ChEMBL · Wikidata · full sourcing