PREDICT-HD Press

The PREDICT-HD Press is a quarterly newsletter written for participants of PREDICT-HD as well as their families, and those interested in participating. 

 

If you have any comments, suggestions, corrections or any other feedback regarding the newsletter, please email Sean at sean-thompson@uiowa.edu. Also, we are always looking for contributions directly from participants. Send Sean your ideas!

 

2014 Issue 1

  • The 13-year PREDICT-HD study is concluding its large scale, international data collection effort. Read about the conclusion and the study moving forward.
  • New study findings are summarized here that may lead to the missing piece needed to determine whether treatments are effective early in the disease process.
  • Read about participant Susan Reasor, who helped establish the Huntington's Disease Society of America Greater North Texas Affiliate and brought research opportunities to her community that had previously not been available.
  • In her own words, participant Kasci Brantley tells her compelling story of testing for HD and participating in PREDICT-HD.
  • And more!

 

2013 Issue 1

  • CSF – the next big thing in HD?: Optional spinal tap added to the study to collect cerebrospinal fluid, as researchers think it could lead to a better understanding of HD-related biochemical events happening in the brain.
  • Visit changes reflect an evolving study: An overview of recent changes to the study day.
  • Participant proud of first CSF contribution: A participant shares her experience of taking part in the CSF collection.
  • Advances in image analysis, HD diagnosis: A recap of two recently published medical journal articles.
  • College student's HD journey leads to job with PREDICT-HD: A student's desire to help those with HD leads to job with the study.
  • Coordinator Corner: A Q&A with Gigi Satris.
  • And more!

 

2012 Issue 1

  • Breaking out of the research bubble: Let PREDICT-HD be a part of your next HD event!
  • PREDICT-HD study results advance HD knowledge: Brain volume predicts HD onset, coping with HD done positively, increased levels of biomarker seen in diagnosed individuals also seen in pre-diagnosed
  • The National Institute of Neurological Disorders and Stroke (NINDS) to fund PREDICT-HD sub studies
  • PREDICT-HD Biostatistics Chair, Jeff Long, authors book about the statistical software used in analysis of PREDICT-HD data
  • The PREDICT-HD map: global and local
  • Nancy Downing to conduct new sub study examining when and why HD weight loss occurs
  • Coordinator Corner: A Q&A with PREDICT-HD Coordinator, Steve Andrew
  • Huntington's Disease Youth Organization (HDYO) board member, B.J. Viau, gives reflections on participating in the PREDICT-HD study

2011 Issue 1

  • Walking the walk for research: HDSA Board Chair Don Barr also a PREDICT-HD participant
  • HSC inspires hope in Edmonton
  • The PREDICT-HD map: global and local
  • Speakers urge involvement at HDSA National Convention
  • Tamara Hershey named co-chair of Tourette board
  • Mark set in 2010 for articles published: a brief summary of selected articles
  • Coordinator Corner: Melissa Wesson came full circle with PREDICT-HD
  • "You're doing this to help the HD community," advocate and participant Lauren Holder
  • Multi-faceted work continues in PREDICT-HD: featuring imaging, brain donation and biostatistics

 

2010: Issue 1

  • The whole PREDICT-HD team of researchers gathered in San Francisco this year to discuss future plans for the study
  • There is a need for participants who have tested gene negative for HD in PREDICT-HD
  • PREDICT-HD staff have been visiting various HD meetings and conventions to spread the word about our study
  • Results from the RESPOND-HD study, a sub study of PREDICT-HD, shows many people in HD families have felt discriminated against
  • Coordinator corner: A profile of Arik Johnson of UCLA
  • A rundown of what some of the scientific sections within PREDICT-HD are working on
  • A recap of recently published articles detailing PREDICT-HD results

 

2009: Issue 1 

  • pat and participant.jpgThe NIH renews the PREDICT-HD study for five more years
  • PREDICT-HD 2.0 on the cutting edge of research technology
  • PREDICT-HD by the numbers: A map showing participant numbers
  • HDSA convention successful for PREDICT-HD
  • PREDICT-HD research recently published
  • Same goals, but a different experience: A veteran participant reports a positive experience during her first PREDICT-HD 2.0 visit at Iowa
  • Find PREDICT-HD now on YouTube: Study hopes to expand community using social networking on the Web
  • Questions to be more specific in PREDICT-HD 2.0, new measures added

 

2007: Issue 1 hands world.jpg

  • Companions are making a difference
  • 3rd annual PREDICT-HD study luncheon
  • Inspirational quotes for volunteers
  • Current enrollment: 989 participants
  • Study enrollment aiming toward 1000
  • Publications 2007
  • Keeping your mind active

 

2006: Issue 2

  • Research highlight: Recent PREDICT-HD study publication
  • Participant corner: Frequently Asked Questions
  • Event highlights: Huntington’s Disease Society of America Convention & PREDICT-HD Presentations
  • Convention & PREDICT-HD presentations
  • Mark your calendar: PREDICT-HD 2006 presentations around the world
  • Current enrollment: 872 participants

 

2006: Issue 1

  • Research highlight: Early baseline data findings fruit newsletter graphic.gif
  • Nutrition: Benefits from increasing calories and servings for very active HD individuals
  • Study involvement: Encourage participation
  • Participant feedback: Site performance ratings
  • Current enrollment: 701 participants

 

2005: Issue 3

  • Research highlight: The future of PREDICT-HD
  • Fast facts: Gender and gene status percentages
  • Advocacy: Genetic Information Nondiscrimination Act (GINA) passes
  • Event highlights: Professionals and researchers from around the world educate and support HD families
  • Current enrollment: 633 participants

 

2005: Issue 2 europe-outline-map.gif

  • Research highlight: A participant’s perspective
  • PREDICT-HD update: Seven European sites joining PREDICT-HD
  • Fast facts: Participants in 3rd year of study
  • Good news: The future of PREDICT-HD
  • Upcoming events: Special invitation to PREDICT participants at HDSA Convention
  • Current enrollment: 574 participants

 

2005: Issue 1 drums photo.jpg

  • Research highlight: NIH reviews PREDICT
  • Fast facts: Participants in PREDICT
  • Benefit highlights: Musical performances in Michigan & Iowa for HD
  • Staff highlight: Introducing our new site coordinators
  • Current enrollment: 540 participants!
  • Looking forward: The months ahead

 

2004: Issue 4

  • PREDICT-HD update: A year of giving back to the HD community
  • Site highlight: PREDICT-HD welcomes Washington University School of Medicine, St. Louis, MO
  • Current enrollment: 490 participants!
  • Looking forward: The next year of giving back

 

2004: Issue 3

  • Site highlight: The University of British Columbia in Vancouver, Canada
  • Research update: PREDICT-HD at the HSG 11th Annual Meeting
  • Current enrollment: 389 participants!
  • Participant highlight: Reflections
  • Staff highlight: New neuropsychologists Leigh Beglinger and Kevin Duff

 

2003: Issue 2

  • Research update: Cognitive training georgia newsletter.gif
  • Staff highlight: Dr. Martha Nance
  • Site highlight: Emory University School of Medicine, Atlanta, Georgia
  • Current enrollment: 339 participants!
  • Participant highlight: Reflections of one participants thoughts on PREDICT-HD

 

2003: Issue 1

  • Meet the PREDICT-HD Principal Investigators: Drs. Jane Paulsen, Michael Hayden, and Elizabeth Aylward
  • In the lab: Dr. Marcy MacDonald analyzes DNA from PREDICT-HD
  • Cognitive corner: Cognitive testing in PREDICT-HD 
  • Coordination of data
  • Volunteer voices: quotes from volunteers
  • Recruitment coordinator Elizabeth Penziner
  • How can you and your family help fight HD?
  • PREDICT-HD sites and contact phone numbers