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J39 Recruitment Rate For Studies On Huntington’s Disease In Poland
  1. D Zielonka1,
  2. A Klimberg2,
  3. JT Marcinkowski2
  1. 1Department of Epidemiology of Rare Diseases and Neuroepidemiology, Poznan University of Medical Sciences, Poznań, Poland
  2. 2Chair of Social Medicine, Poznan University of Medical Sciences, Poznań, Poland

Abstract

Huntington’s disease (HD) is a genetic, progressive neurodegenerative disorder. Given that this disease is rare, it is very difficult to collect a large cohort of HD subjects for a significant interventional and environmental studies.

The international HD cohort research initiatives were reviewed in the U.S. National Library of Medicine National Institutes of Health (PubMed), Clinical Trials – a service of the U.S. National Institutes of Health (www.clinicaltrials.gov) and an archive of the HD research Coordination Centre for Poland located at the Chair of Social Medicine of Poznan University of Medical Sciences, Poland.

Over one thousand participants were investigated in two observational and three clinical studies. REGISTRY is a prospective, observational, longitudinal study on the rate of HD progression collecting large number of data on patients during annual visits. HD studies participant’s number as well as number of cross-sectional and clinical studies increased dramatically in last years. Based on REGISTRY database patients may be efficiently recruited to other studies.

Poland has become an attractive country for conducting a large study such REGISTRY, that is a novel approach to overcome difficulties in patient collection for Huntington’s disease interventional and environmental studies, effectively increase number of participants enrolled to studies.

KeyWords
  • Huntington’s disease
  • rare diseases
  • cohort studies

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