Sponsor study identifier
interventional
15
1 country
1
Study Start
November 2009
Date type not reportedThis date has not been verified as actual or estimated.
Primary Completion
May 4, 2019
Actual (reported)Study Completion
May 4, 2019
Actual (reported)This is a study of kinetin, a nutritional supplement that corrects the mRNA splicing defect in patients with familial dysautonomia (FD, also known as Riley Day syndrome or hereditary sensory and autonomic neuropathy type III). FD is a rare fatal autosomal recessive disease in which the growth and development of selective neuronal populations is impaired. The disease is the result of a point mutation in the gene sequence that encodes for kinase complex associated protein (IKAP) in chromosome 9q31. The mutation, at the start of the non-encoding intron 20, weakens the splice site, causing the spliceosome to wrongly join together exons 19 and 21 when transcribing the mRNA strand and miss out exon 20. The mutated mRNA produces a short unstable IKAP protein that is quickly degraded. Interestingly, the mutation does not lead to a complete loss of function. Instead, it results in a tissue specific deficiency in splicing efficiency with both normal (wild type) and mutant IKAP mRNA being expressed in different ratios in different tissues. Some cells, like fibroblasts, produce mostly normal mRNA and protein, where as others, like neurons, produce mostly mutant mRNA and almost no functional protein product.
Registry-reported information. Elapsed time and enrollment totals alone do not measure study progress or recruitment pace.
May 4, 2019
Actual (reported)Click on a node to explore related trials.
Some registry-reported names shown below are not yet linked in this graph.
Dates and qualifiers reported by the registry. Estimated dates do not confirm that a milestone has occurred.
November 2009
Date type not reportedThis date has not been verified as actual or estimated.
October 21, 2014
Actual (reported)October 24, 2014
Actual (reported)May 4, 2019
Actual (reported)May 4, 2019
Actual (reported)Change in Safety blood labs
safety blood labs (CBC, metabolic panel)
At baseline and after each 6 months period and at 36 months
Change in vital signs
Sitting and standing blood pressure measurements and heart rate
At baseline and after each 6 months period and at 36 months
Change in ECG
12 lead ECG measures
At baseline and after each 6 months period and at 36 months
Number of participants with adverse events
Number of adverse events
At baseline and after each 6 months period and at 36 months
Kinetin titration phase to 30mg/kg dose or individual max dose taken once daily. Patients will then proceed to steady state long-term phase at maximum individual dose of kinetin over a 3 year period.
Titration of Kinetin to maximum individualized dose, then steady state over a 3 year period once daily dose.
Registry-reported names are shown in full. Names without a link have not yet been matched to a Syfrah profile.
NYU Langone Medical Center
New York, New York, 10016, United States
Horacio Kaufmann, MD
NYU School of Medicine
15 participants (actual enrollment reported by the registry).
First Submitted
October 21, 2014
First Posted
October 24, 2014
Study Start
November 2009
Date type not reportedThis date has not been verified as actual or estimated.
Contact the study team to confirm eligibility.
Primary Completion
May 4, 2019
Actual (reported)Study Completion
May 4, 2019
Actual (reported)Last Updated
June 18, 2019
Record last verified: 2019-06
Download the complete ClinicalTrials.gov record imported by Syfrah, including fields not shown in this page. The registry may contain a newer revision.
Source: ClinicalTrials.gov.
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