JHD Qualitative Study  

The University of Iowa is currently recruiting individuals to be a part of a research study evaluating the experiences of parents/guardians of children with Juvenile Huntington’s Disease (JHD). An informal interview will be conducted to examine the views and opinions of families affected by JHD regarding their health care needs and their experiences with JHD.  This study also hopes to understand the various coping mechanisms families affected by JHD may use, in addition to other support systems through family, friends, professionals, etc. 

Individuals who are 18 years of age or older and have a child affected by JHD that are interested in being involved in this research project are encouraged to contact Stacie Vik at Stacie-vik@uiowa.edu or 319-353-3716 for more information.

JHD Natural History Study

The University of Iowa is currently recruiting individuals who have shown features of JHD before the age of 20 to be a part of a study to research the effectiveness of clinical measurements relating to Juvenile Huntington’s Disease. This study will compare the current adult version of the Unified Huntington’s Disease Rating Scale (UHDRS ‘99) with a new modified version specifically developed for the JHD population. The purpose of this research study is to better understand JHD, and to improve the currently available tools to follow the course of the disease in this younger age group.

Both parents and individuals affected by JHD who are interested in being involved in this research project are encouraged to contact Jana Hanson at 319-353-4537 or jana-hanson@uiowa.edu for more information.