ASPIRE-HD: Assessing Social Perception, Interaction & Recognition of Emotion in Huntington’s Disease is a new study by Dr. Clare Eddy of Birmingham and Solihull Mental Health NHS Trust (England).
Some people with Huntington's disease can struggle to understand other people's thoughts and emotions, and this may happen at an early stage. These problems can negatively affect social interaction, relationships, and the well-being of patients, their families, and carers. The evidence suggests that specially designed interventions may be able to help with social skills. To design these interventions, we first need to understand more about social difficulties experienced by people with Huntington's disease and be able to assess them. This research study aims to develop a new social functioning scale for people with Huntington's disease, to show where help is needed, and when treatment has worked. We will interview patients and their families about social interaction. We will use the information gained to develop the scale and test it to make sure it is accurate.
People affected by HD will guide our research, by making sure the measure is easy to use and helping to design training materials about the social side of HD. This study will focus on social cognition and emotional responses. This will provide information to help support patients who may need a diagnosis, without waiting for overt motor symptoms (chorea) to manifest.
Please watch the short video below which will provide you with an outline of the ASPIRE-HD study. After viewing the video, please take our short poll and feel free to provide your comments/feedback!
Feel free to watch in full-screen view and pause the presentation as needed.
Comments/Feedback will be posted below. Please check back! daily
Organizations and Medical Professionals Support:
Debbi-Fox Davis (HDCare.org), NC USA
Donaji Toledo (AMEH - Mexican Huntington's Disease Association)
Dr. Peg Nopoulos (University of Iowa), Iowa City, Iowa
Cath Stanely (HDA) Huntington's Disease Association, England
Dr. Herwig Lange (George Huntington Institute), Germany
"This study trial will help many. I know from attending my support group here. I am sending this to the HDA and will ask them to share as well." - Hellen M. (England)
"Social interactions is a problem with my son he is 26 and hates being around anyone, relatives kind of understand but the entire situation is hurting all of us. He does not have the movements but I know I see him and his thinking and emotions are not the same. Thank you." Liz B. (USA)
"The study is definitely missing from all the others right now. It seems as though our researchers are missing this. I am 100% behind this. I lost my husband from HD and now my son is looking just like his father. They both handle social gatherings regardless very badly." - Margarette S. (Canada)
"We musn't wait for chorea when cognitive and social decline happens. My son is experiencing this and I am pleased to see this project study." (England)
"Congrats! This would help with community inclusion especially our local businesses and service workers like fire and police to understand this illness. So many of our warriors are put in jail because they just don't understand." (USA)
Do you support the ASPIRE-HD study?
"People who live like we do understand what its like to care for our HD warriors! I do hope this trial will help make our doctors and community understand HD and the ups and downs we go through because of social problems with many people outside in the world! If this will help make things change then you have my vote!" Frank (USA)
"I am a supporter of WeHaveAFace.org and believe every effort should be made to find ways to ease the symptoms of Huntington’s disease and, ultimately find a cure." - Diane Finocchio (USA)
"Many don't talk about the social issues we face as families and caregivers when we are out in public spaces. We try to educate people and that's great but we need more people doing something like this. My daughter hates going out but she tries to but what can we do?" - Beverly P. (USA)
"I am in favor of this study all the way! This has been an issue for our HD warriors and families. We talk about this all the time on our virtual calls. We need to have this to make it easier for all of the patients who don't have movements." - (USA)
"My dad passed away 2 yrs ago he took his life and social anxiety was intense for him and us to. He never had chore and his life was torn up by the emotional and social parts of this. I think he did not feel human outside with people. If we only had doctors who got this and knew that social problems are real maybe my dad would be here." - (Canada)
"I am responding because my son has been cutting himself, his arms when he gets fed up and has to go with me when we leave the house. He doent do it when family is here at the house but we know when he is getting stressed. We had bad experiences with people in the neighborhood who pick on him or laugh. We need help!" (USA)
"Studies like this should have been in place a long time ago! If we wait for chorea we are not ahead of this disease!!!" (USA)
"I have HD." - USA
"Anything with this type of research is important. We waste so much time on the physical aspects and it's time to concern ourselves with the cognitive and social issues!" - USA
"I support this study as a mum of two with HD. Social interactions. One of my daughters used to leave the house without clothing and we had to explain to neighbors and the police. We need more awareness." - England
"Def something we need right now!" USA
"Social and emotional sides of this disease should be measured and used to help the family and the patient without question. I back this trial and good luck!" -USA
"If we can have a way to get this data information and use it for our HD warriors then I support this. I know for sure people would do this trial because there is more to this disease then movements!" - Canada
"I am shocked that a study of this kind has not happened. I would urge my son to attend!." - England