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This update will allow patients to receive a diagnosis without waiting for the onset of chorea. A diagnosis based on emotional, cognitive, psychiatric, and vegetative symptoms, will afford patients and families the services and supports they need now.

 

Do you agree with the proposed updated diagnostic criteria for Huntington’s disease?

Countries Responded: 

Australia, Canada, Chile, England, France, Germany, Ireland, Italy, Mexico, New Zealand, Portugal, Scotland, Spain, USA

Stats and countries will be updated daily. 

Please check back!

Poll Comments (Unedited):
 

"My 46 year old HD+ son was so deeply in debt that he took his own life. He saw no way out. If he had been given the written diagnosis when he was first tested, he may have received permanent disability, social security and the health care he needed." - USA
 

"Is the HSC part of this? I don’t see them at all. We need a global team on this project." - Canada

"Very important to remove the HD diagnosis from chorea, since that often begins later if ever for some people. Thank you." - USA

"I pray to God that they make these changes. Great work!" - England

"Thank you for making changes in the criteria. It's been a problem for me with neurologists. One told me criteria needs to change." - USA

"I think it’s important for the reflection of change ,! and I was tested in 1995 when my family was scared to let any one know that my dad and his dad and great grandma all died from Huntingtons and I will do every research studies out there! My dad had his brain go to Harvard and I am also!! We need to find a cure and meds for hd!! Doc please stop the monster!!!!????!??" - USA

"I hope the poll works because they never listen to what we need as patients and family members here." - USA

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Poll Comments (Unedited):
 

"I cannot believe or understand why this has not changed already. This is perfect for us." - USA

 

Translated: "We needed it years ago." France

 

"They need to listen to the families on this one!" Australia 

 

"Thank you for your continued hard work and support in our HD community!" USA

 

"The broken healthcare system in the USA is inadequate to care for patients properly. Setting these standards will give us a common voice that counts. HD friends and family members are often not afforded even the basic benefits of dental care. It depends on where you live and the policies of the state you live in, as well as the healthcare you can afford. Lets hope we can get these as a common standard of care into the HDSA Centers of Excellence, and somehow get better support for the basic needs of families suffering the consequences of HD. Thank you for developing this criteria. Cheers!" - USA

"Significant changes need to be offered to get the genetic testing done." - USA

Translated: "Patients need the diagnosis of Huntington's when necessary.  Support and care must be available when a person needs it." - Mexico

"This is absolutely imperative to put these changes in place as the gold standard." - Canada

Poll Comments (Unedited):
 

"Looking forward to support and comments from the HD-community." - Germany

Translated: "This is important and must be changed" - Germany

"Is the HDSA working with you all on this?  How can I help make sure our local support groups know this!" - USA

"It is brilliant and well written.  This change is needed and we support it." - England

"Clear and thorough criteria are proposed. Hopefully this will help secure the change so needed for those affected." - England

"valid information" - Germany

"I know my answer won't matter anymore but this needed to be changed before both of my sons died from this disease.  The centers need to push it through for those people who have family still alive." USA

"I was put through hell to try get my  daughter a diagnsos of HD they did not care at all!!! Thank god you guys are doing this!!!!!!"  USA

"Some think just because we are Canadians that we don't have this problem but we do.  I have been an advocate since 1987 and I only pray that changes will happen for others struggle with HD." Canada

**More Comments Posted Soon**

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