MyHDstory online platform asks HD patients to share their experiences

When I share with others that my wife, Jill, has Huntington’s disease (HD), I often get a blank stare back. Because it’s a rare disease, most people have never heard of it. When I tell them how terrible it is, they usually respond with expressions of grief. I am grateful for their empathy, but words won’t help Jill or anyone else who suffers from this horrible disease.

Empathy combined with the will to act, which is why I was happy to read an article about a new research project sponsored by the Huntington Study Group (HSG). The organization, which has been researching HD for more than 25 years, recently rolled out a new platform to help promote awareness of how HD affects patients and caregivers, and who may be at risk. genetics of contracting the disease.

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The platform, called my story HDincludes a new online research study called Making HD Voices Heard which is currently recruiting participants.

“When you participate, you will be asked to think about the issues you are facing,” said Dr. Karen Anderson, the study’s lead researcher and professor of psychiatry and neurology at Georgetown University. video explaining the project.

“Some of these issues can be hard to think about or can bring up uncomfortable feelings,” she added. “We are asking you these questions because understanding your personal experience of living with HD helps us make research more centered on you.”

By exploring what HD patients feel and experience with their diseases, health and well-being, HSG hopes to “develop meaningful results for use in clinical trials of experiential treatments,” she said.

Anderson emphasized that the study aims to empower HD patients 18 and older to “have a say in the design and delivery of research studies and care.”

The online survey takes approximately two hours to complete. HSG hopes to enroll up to 500 participants who have been diagnosed with HD. Registrations are open for three months.

My wife is participating, and I hope everyone who shares their answers helps clinical researchers, doctors, and pharmaceutical companies in their quest to alleviate the suffering of HD patients. Maybe it could even advance efforts to develop a cure, because every little bit counts.


To note: Huntington’s disease news is strictly a disease news and information site. It does not provide medical advice, diagnosis or treatment. This content is not intended to replace professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of anything you read on this website. The opinions expressed in this column are not those of Huntington’s disease news or its parent company, BioNews, and are intended to spark discussion about Huntington’s disease issues.

Stephen V. Lee