The Marker - 2004 - Huntington's Disease Society of America

More documents

Recommendations

Info

WHAT DO EACH OF THESE HD PROJECTS STUDY? Brain Bank: The purpose is to obtain brain tissue from individuals with HD and related disorders in order to better understand the pathological changes that occur in the brain (See Fulfilling the Promise issue of The Marker for complete list of brain banks for HD). Changes in Walking Patterns: A pilot study that defines problems and develops strategies for improving gait in early HD. CREST: Creatine Safety and Tolerability in HD determines the safety and tolerability of Creatine in patients with HD as well as whether Creatine is beneficial in treating the symptoms of the disease. fMRI: Functional Magnetic Resonance Imaging is used to produce pictures of the brain. Gene positive, pre-symptomatic adults (18 years and older) are being recruited for this four-hour project that takes place in Milwaukee, WI. Genetic Discrimination Study asks those who have been genetically tested to participate in a one-time telephone interview to gather information about experiences and perceptions regarding discrimination in order to identify topics of concern to those at risk for HD. Genetic Factors that Influence HD: The purpose is to find genes that modify age of onset or other features of HD. Finding these genes may provide clues for therapeutic approaches. HD MAPS is a larger study of this premise. General HD Battery asks individuals at risk or diagnosed with HD to participate in this yearly two hour study which assesses motor, psychiatric, cognitive and behavioral changes. HD and Long Term Care: This study looked at the characteristics that predicted nursing home placement for people with HD. This study has been completed but a modified study is being considered. HD MAPS: HD Modifiers in Age at onset in Pairs of Siblings uses siblings to investigate the genetic factors that influence the age at which HD onset occurs and its severity. The study requires a blood sample from affected brothers and sisters and information about age of onset. Identification of Neurological and Psychiatric Disorders: This study identifies and characterizes the genetic causes of inherited neurological and psychiatric disorders. Participants must be affected with symptoms similar to HD. Immune-HD studies the alterations in systemic immune functions in HD. Interviews on Living with HD: Interviews are conducted with individuals who have or are at risk for genetically related disorders, including HD, concerning their views on genetic privacy and their experiences. Longitudinal UHDRS database is a multiyear project to develop a database of individuals that are at risk or have HD. This information will ultimately be used to plan for future research studies. Memantine for HD: Study sponsored by Forest Pharmaceuticals of the effects of memantine on cognition, behavior and functioning in HD. MRI: Gene positive individuals may participate in this project that uses magnetic resonance imaging (MRI) scans to measure the volume of different regions of the brain in order to gain information about the disease process for HD. Neuropsychiatry Inventory in HD is a unified effort by various HSG sites to gather standardized information concerning behavioral problems in individuals with HD as perceived by their primary caregiver in order to establish baseline clinical information that might lead to future studies/research. Optimism: This project studies optimism, coping styles and distress. Information gathered will help researchers understand how certain beliefs influence mental health and ways that people with HD deal with situations. Outreach Study: This study observes the development of symptoms of those diagnosed with HD over a lifetime. Patients are followed on an annual or bi-annual basis when no longer able to travel to clinic to monitor changes in the condition of each patient. This is an extension of the Longitudinal UHDRS database and allows those who can no longer attend clinic to contribute to research. OxPhos: This study looks at how people with HD use sugar and oxygen in the brain. PET Imaging: Positron Emission Topography (PET) is used to examine brain function in both HD patients and persons at risk for HD. The goals of the project are to explain the mechanisms underlying the different symptoms of HD and to find better ways to measure progression in HD. PHAIMOS: Prospective HD Assessment using Indices for Motor Skill is an HDSA funded study that looks at motor control in people who are gene positive for HD or have been recently diagnosed through one or more sessions lasting up to two hours. PHAROS: Prospective Huntington At Risk Observational Study looks at people who are at risk for HD to determine the earliest signs of the disease using interviews, surveys and examinations every 9 months for up to 10 visits. PHEND-HD: Phenylbutyrate Development for HD will evaluate the safety, tolerability and clinical impact of the drug phenylbutyrate and will begin in Spring 2004. The study will last 20 weeks with a visit or telephone contact every four weeks. 18
Pre2CARE: Pilot Safety and Tolerability Study of Co-Enzyme Q10 in HD and Normal Subjects will establish the tolerability of high dosages of Co-Enzyme Q10. Recruitment completed in January 2004. PREDICT-HD: Neurobiological Predictors of HD Onset is an observational study that will help to define the earliest changes in HD. Information gained will help researchers to judge the effectiveness of future treatments more accurately. Gene positive but asymptomatic participants are evaluated through MR imaging, interviews and surveys once a year for four years. Quantifying Motor Abnormalities in HD: uses a computerized program, MOTUS, to quantify bradykinesia and chorea in HD. People with manifest HD are eligible for this study. Startle in Pre-Symptomatic HD characterizes the startle reflex, the unlearned response to a startling stimulus, in HD prior to the onset of motor symptoms. Adults (18 years or older) who have been gene tested and are presymptomatic will listen to varying sound decibel levels through headphones while their eye blink activity is measured. HDSA to Add Three TETRA-HD: Tetrabenazine for the Treatment of Huntington’s Chorea is designed to assess and gather information on the optimal dosage of tetrabenazine. Participants must be 18 years of age or older with chorea as a significant feature of their HD. TETRA Withdrawal: An FDA supported blind staggered five day withdrawal of approximately 2/3 of the 45 patients in the study who have been chronically on Tetrabenazine to help their chorea. NEW CENTERS OF EXCELLENCE in 2004! impact and importance of the HDSA Center of Excellence designation to the HD community of families and allied healthcare professionals. Thanks to an anonymous donor, HDSA has received a $150,000 ‘seed grant’ that will allow the Society to establish three new HDSA Centers of Excellence in 2004 and thus bring HDSA one step closer to its goal of establishing 25 Centers of Excellence by 2005. As part of HDSA’s continuing commitment to care, letters of interest were sought from major medical facilities throughout the country in late 2003 and selection of the top five was made by the Grants Subcommittee of the Center Program and Education Advisory Committee (CPEAC) in late fall for submission of a full application. The selection process will continue through 2004 and includes evaluation of the existing medical program for Huntington’s Disease, services that would be added as a result of the Center of Excellence designation, current patient base, estimated increase in patient base, support from the community as well as support from the HDSA chapter (where applicable). A recent study conducted by HDSA on the Center of Excellence program revealed that both the patient base and use of the Center as a hub for regional referrals and resources increases significantly over the first two years in the program thus illustrating the positive HDSA Centers of Excellence work closely with local primary care physicians to implement palliative care programs that provide the best quality of life for each HD patient between their annual or bi-annual visits to their Center of Excellence. Social workers at HDSA Centers of Excellence answer the needs of HD families in their community and area of service. HDSA Centers of Excellence also provide outreach and education to the community while relying upon the community to provide financial support through participation at special events, seminars, conferences and other Celebration of Hope events held to benefit that HDSA Center of Excellence. The five areas which have been invited to submit full applications for consideration as an HDSA Center of Excellence in 2004 are: ■ ■ ■ ■ ■ Indianapolis, IN Chicago, IL Tampa, FL San Francisco, CA Los Angeles, CA. The three facilities that are ranked highest by the various reviewing committees will be presented to the HDSA national Board of Trustees in October 2004 for final review and approval. Grants would commence on an annual basis thereafter. The results of the October 2004 Board of Trustees meeting will be published in an HDSA national publication.
Page 1 and 2: marker THE Huntington’s Disease S
Page 3 and 4: a message from B ARBARA B OYLE HDSA
Page 5 and 6: The new organization calls for curr
Page 7 and 8: Renewing Grants 2003-2004 Yury O. C
Page 9 and 10: MAJOR INVESTORS TO THE HDSA COALITI
Page 11 and 12: esearch updates HDSA’S $20 MILLIO
Page 13 and 14: II. CELL AND ANIMAL MODELS A. Mouse
Page 15 and 16: OCTOBER 10, 2003 The Grand Ballroom
Page 17 and 18: HDSA CENTERS OF EXCELLENCE LEAD WAY
Page 19: HDSA Center of Excellence at the Un
Page 23 and 24: Social Security Disability Update B
Page 25 and 26: Talking Technology Losing the abili
Page 27 and 28: progress report Living At-Risk Prei
Page 29 and 30: In Loving Memory of DON KING, PH.D.
Page 31 and 32: WAYSW A Y S TOT O GIVEG I V E YOU C
Page 33: continued from page 20 6. Postpone

The Marker - 2004 - Huntington's Disease Society of America

Create successful ePaper yourself

Delete template?

Save as template?