UNIFIED HUNTINGTON'S DISEASE RATING SCALE (UHDRS) and DATABASE

UHDRS

The UHDRS is a research tool which has been developed by the HSG to provide a uniform assessment of the clinical features and course of HD. The UHDRS has undergone extensive reliability and validity testing and has been used as a major outcome measure by the HSG in controlled clinical trials.

The components of the UHDRS are:
1. Motor Assessment
2. Cognitive Assessment
3. Behavioral Assessment
4. Independence Scale
5. Functional Assessment
6. Total Functional Capacity (TFC)

 The full publication reference is:

Huntington Study Group (Kieburtz K, primary author). The Unified Huntington’s Disease Rating Scale: Reliability and Consistency. Mov Dis 1996;11:136-142

The Motor Section of the UHDRS is a supplement to the following Movement Disorders Journal publication:

Volume 11, Issues 1-3, The Unified Huntington’s Disease Rating Scale: Reliability and Consistency. Mov Dis 1996;11:136-142, Supplemental Tape

HOW TO ORDER A UHDRS MOTOR TRAINING TAPE

Contact:

Michelle Ridolfi, Movement Disorders Society, by phone or email: 414-276-2145,

Request:

Refer to Volume 11, Issues 1-3, The Unified Huntington’s Disease Rating Scale: Reliability and Consistency. Mov Dis 1996;11:136-142, Supplemental Tape

Fee:

$30 for MDS members, $100 for non-members, $5,000 for industry representatives

Rating Scale:

Refer to Huntington Study Group (Kieburtz K, primary author). The Unified Huntington’s Disease Rating Scale: Reliability and Consistency. Mov Dis 1996;11:136-142

UHDRS '99

UHDRS '99 represents an update and expansion of the UHDRS to augment the utility and applicability of this research tool.  In 1999 a team of HD researchers enhanced all of the components of the UHDRS. In 2005 the Behavioral Assessment section was further clarified and refined based on research experience. 

HOW TO OBTAIN PERMISSION TO USE THE UHDRS

The Unified Huntington Disease Rating Scale (UHDRS) and revised UHDRS '99 and accompanying manual created by the HSG members are the copywrited intellectual property of the HSG.  As such clinical use of this tool for academic and commercial research purposes requires permission. Aileen Shinaman, JD, Executive Director of the Huntington Study Group located at the University of Rochester, must be contacted to obtain permission and approval for use of the UHDRS. 

Please note that there are certain non-HSG components incorporated within the UHDRS that are not the intellectual property of the HSG, and therefore, you will be required to seek and obtain separate permissions from the owners of these scales.  This includes the following: 

• Symbol Digit Modalities Test (SDMT) – Western Psychological Services owns this test.  The testing form based on the original SMDT manuscript must be purchased for use.  If an alternative version of the SDMT is used, permission must be obtained from WPS and a fee for use must be paid to WPS.
• Stroop and Verbal Fluency - these scales appear to be in the public domain, however, you need to obtain permission for use from Psychological Assessment Resources, Inc.
• TFC – Permission for use is needed for this assessment tool from the author Ira Shoulson, MD.

Contact:
Aileen Shinaman, JD
Executive Director, Huntington Study Group
University of Rochester
1351 Mt Hope Avenue, Suite 223
Rochester. NY  14623
(585) 275-7311

UHDRS NATURAL HISTORY DATABASE

The UHDRS Natural History Database is a compilation of more than 8,000 individuals.  The database includes individuals affected by or immediately at risk for HD.  HSG researchers have used this valuable cohort to investigate research questions.  The following are two of many research publications using this cohort.  Please click on HDG publications for additional manuscripts based on the UHDRS Natural History Database.

Factors associated with the rate of functional decline were evaluated using the UHDRS natural history database in a large HD cohort followed longitudinally for up to four years. A full report was published by The Huntington Study Group (Marder K, primary author). Rate of functional decline in Huntington’s disease. Neurology 54:452-458, 2000.

Early identification of clinical changes in HD may be of critical importance for the design and implementation of clinical trials to slow the progression of the disease.  A full report of this paper was published by:  The Huntington Study Group (Paulsen JS, primary author). Clinical markers of early disease in persons near onset of Huntington’s disease. Neurology 2001;57:658-662.