Skip to main content
OpenTrials
Recruiting

NCT Number: NCT04023656

Prognosis of Paroxysmal Kinesigenic Choreoathetosis in Korea

The aim of this study is to assess the prognosis of paroxysmal kinesigenic choreoathetosis (PKC) in Korean.

Recruiting

Interested in participating?

Request Info

Key information

Conditions

Paroxysmal Kinesigenic Choreoathetosis Familial paroxysmal dystonia

Age range

18 year and older

Sex eligibility

All sexes

Study type

Observational

Primary location

Seoul National University Hospital

Seoul, 03080, South Korea

Location status: Recruiting

Location contact

Han-joon Kim, MD, Ph.D

CONTACT

[email protected]

+82-2-2072-1219

Han-joon Kim, MD, Ph.D

PRINCIPAL_INVESTIGATOR

About this study

PKC is a hyperkinetic movement disorder including dystonia, chorea, athetosis, or ballism, which are characteristically triggered by a sudden movement from rest. The prevalence of this disorder is estimated to be 1 in 150,000 population. Males are more commonly affected than females, and the age of onset is typically in childhood or adolescence. PKC is mainly a familial disorder with autosomal dominant inheritance and incomplete penetrance, but it can occur sporadically. The PRRT2 (proline-rich transmembrane protein 2) gene is believed to be the major causative gene.

The prognosis of PKC is usually favorable. The severity and frequency of the attacks are reduced by anticonvulsant medication such as carbamazepine, and the number of the attacks decreases at the age of 20-30 years. However, there has been little study of long-term prognosis of PKC, and no study has been conducted in Korean population.

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

Inclusion criteria

  • Male or female PKC patients who were18 years of age and older
  • Subjects were diagnosed as paroxysmal kinesigenic choreoathetosis (PKC)
  • Subjects were enrolled voluntarily and understood the contents of this trial

Exclusion criteria

  • Existence of lesions on the brain
  • Existence of neurological deficit that suspected lesions on the brain
  • Existence of epileptiform discharges on electroencephalogram
  • Subjects with secondary PKC which was caused by other disorder or illness
  • Existence of illness or problems which made difficult to be enrolled to this trial judged by clinicians

Treatment and study plan

Primary outcomes

  1. Changes in clinical characteristics of PKC relative to the baseline.

    Time frame: up to 10 years

    Improvement or worsening of the attacks relative to the baseline state assessed by a questionnaire, categorized as following; 1, full remission (absence of the attacks); 2, improvement (more than 50% decreased mean frequency of the attacks); 3, worsening (increased frequency of the attacks).

  2. Changes in clinical characteristics of PKC over the last year.

    Time frame: up to 10 years

    Improvement or worsening of the attacks over the last year assessed by a questionnaire, categorized as following; 1, full remission (absence of the attacks); 2, improvement (more than 50% decreased mean frequency of the attacks); 3, worsening (increased frequency of the attacks).

  3. Changes in medication history of PKC over the last year.

    Time frame: up to 10 years

    Continuation or discontinuation of the medication for relief of the attacks assessed by a questionnaire, categorized as following; 1, continuation of medication; 2, discontinuation of medication.

Study contacts

Contact information is provided by the study sponsor or research team.

Han-joon Kim, MD, Ph.D

CONTACT

[email protected]

+82-2-2072-1219

Sponsors and collaborators

Lead sponsor

Seoul National University Hospital

Other

Registry information

Official study title

Prognosis of Paroxysmal Kinesigenic Choreoathetosis in Korea: a Prospective, Observational Study

Important dates

Study start
2016
Primary completion
2026
Study completion
2026
First posted
Jul 17, 2019
Registry last updated
Jul 17, 2019

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

Related clinical trials

Published trials that share one or more normalized conditions with this study.