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Establishment of Genomic and Phenotypic Database for Niemann-Pick Disease, Type C

StatusRecruiting
PhaseNot specified
Started
View on ClinicalTrials.gov ↗
Trial flagged as At Risk
Primary completion moved at least 12 months later Sep 30, 2026 → Sep 30, 2027
See other at-risk trials from Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)

Record History

The 50 most recent of 180 record versions are accounted for below. See every version on ClinicalTrials.gov ↗

  1. Primary and study completion pushed from Sep 30, 2026 to Sep 30, 2027
    • Eligibility criteria expanded, about 8 words
    • Study description expanded, about 3 words
  2. 35 versions Re-verified since Oct 27, 2025, no change to tracked fieldsv145-v179
  3. Primary and study completion dates: Sep 30, 2025 to Sep 30, 2026v144
  4. 2 versions Re-verified since Feb 20, 2025, no change to tracked fieldsv142-v143
  5. Primary and study completion dates: Sep 30, 2024 to Sep 30, 2025v141
Show 10 earlier versionsHide 10 earlier versions
  1. 3 versions Re-verified since Oct 13, 2023, no change to tracked fieldsv138-v140
  2. Start date: May 5, 2023 to Nov 28, 2022v137
  3. Re-verified, no change to tracked fieldsv136
  4. Start date changed from estimate of May 22, 2023 to May 5, 2023v135
  5. Start date: May 19, 2023 to May 22, 2023v134
  6. Start date: May 17, 2023 to May 19, 2023v133
  7. Start date: May 15, 2023 to May 17, 2023v132
  8. Start date: May 14, 2023 to May 15, 2023v131
  • Stopped: an ongoing trial was terminated, suspended or withdrawn.
  • Notable: the trial’s plan changed such as a big move in its timeline or size, a new primary endpoint, sponsor or phase, or recruiting opened or resumed.
  • Minor: routine progress and housekeeping, such as sites added or enrollment closed.
Background: Niemann-Pick type C (NPC) disease is a rare, progressive neurodegenerative disease that affects mainly the brain, liver, and spleen but also other parts of the body. There is no cure for NPC, and symptoms only get worse over time. Symptoms can include seizures, difficulty moving or talking, or dementia. But symptoms can vary among different people with the disease. Some may have seizures, while others do not, for example. Some people begin showing symptoms in childhood; in others, symptoms may not appear until they are adults. Researchers want to learn more about why NPC affects people differently. This natural history study will gather data from people with NPC in order to understand more about the disease and how it affects the body. Objective: This study will create the first and largest database about NPC. Eligibility: People of any age who have NPC. Design: Participants will have blood drawn from a vein. This will happen only once. The blood will be used to analyze the participants DNA. The participants medical records will be reviewed. The study team will collect data on participants NPC diagnosis and symptoms; they will record how long participants have had each symptom. The study team will also collect data on each participants age, sex, race, height, weight, medications, and other test results. The study team will communicate with participants. They will discuss the study and answer any questions. Participants will receive up to $190.
Trial Details
NCT Number NCT05588167
Lead Sponsor Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
Conditions
(from sponsor)		 Niemann-Pick Disease, Type C
Related terms Niemann-Pick Disease, Type C
Enrollment 100 participants
Start Date
Primary Completion (estimated)
Study Completion (estimated)
Updated on ClinicalTrials.gov