Welcome to the Huntington Disease Studies Page

CURRENT STUDIES THAT MAY INTEREST YOU

All of Us Pennsylvania Research Program

You may be able to change the future of medicine. The All of Us PA Research Program is enrolling adults 18 years of age or older. This may be your chance to improve how your children and your children’s children receive medical care.

ACL Tear

VISITS: one in person visit

LOCATION: Convenient locations throughout Pennsylvania

COMPENSATION: $25.00 gift card

NO IN-PERSON VISITS

MyPaTH Story Booth: Amplifying African American Voices and Healthcare Experiences

In follow-up of Black History Month, the Story Booth team is putting a special focus on stories from African American storytellers over the next 90 days. We would like to invite patients, caregivers, and health care providers to share their experiences regarding accessing health care. Your voices can empower change to research, patient-centered care, and most importantly, your community.

DURATION: 45 minutes

VISITS: 1 phone call

COMPENSATION: $10 gift card/story with a maximum of 2 stories, for a total of $20

NO IN-PERSON VISITS

MyPaTH Story Booth – COVID-19 Stories

Participants are invited to share how they are maintaining their health during the coronavirus pandemic, or to share what it is like being ill with COVID-19 and/or caring for a loved one who is ill with COVID-19. Participation in this research study involves one 45-minute session that takes place over the phone. Eligible participants must be able to read and understand English.

DURATION: About 45 minutes

VISITS: No in-person visits

LOCATION: By phone

COMPENSATION: $10 gift card/story with a maximum of 2 stories, for a total of $20

NO IN-PERSON VISITS

MyPaTH Story Booth 2.0

Interested in sharing your story about health, illness, or research? Patients and caregivers are needed to participate in a research study to help learn more about topics that are important to you and that may improve health and health care. Participation involves one 45-minute session that takes place over the phone. Eligible participants must be able to read and understand English.

DURATION: 45 minutes

VISITS: 1 visit or phone call

LOCATION: By phone

COMPENSATION: Up to $20

NO IN-PERSON VISITS

Decentralized Biobanking "de-bi": An app for tracking research donations

Are you 18 and older and interested what happens to the tumor/tissue/blood you donate for research? This research project is developing an app for those who want to track or learn about their biosample donations and studying patient preferences for feedback about research on their biosamples.

DURATION: 10 minute survey

VISITS: Online survey

LOCATION: Online

COMPENSATION: NONE

REGISTRY

NO IN-PERSON VISITS

Movement Disorders Research Registry

Do you have a movement disorder? If so, you may be able to participate in the Movement Disorders Registry. This registry is a list of individuals who are interested in being contacted about future research studies.

VISITS: None Required

LOCATION: By email or phone

COMPENSATION: NONE

Genomic Approaches to Recurrent Pregnancy Loss Study

Are you a woman between the ages of 18 and 37 who has experienced a pregnancy loss? You may be able to participate in a study that hopes to better understand the genetic basis of recurrent pregnancy loss.

Chromosomal Disorders

SEX ASSIGNED AT BIRTH: Female

DURATION: 2 Days

LOCATION: Oakland

COMPENSATION: NONE

Spinal Cord Stimulation for the treatment of motor deficits in people with Spinal Muscular Atrophy

Are you affected by Spinal Muscular Atrophy? You may be able to participate in a research study using spinal cord stimulation (SCS), an approved clinical therapy for pain syndromes that do not respond to drugs. Unexpectedly, SCS has shown the ability to promote the recovery of leg motor function in people with complete motor paralysis in consequence of spinal cord injury years after injury.

DURATION: 9 months

VISITS: 35 visits

LOCATION: UPMC Presbyterian

COMPENSATION: $1750

Enroll-HD

Are you the spouse, caregiver, or family member of someone affected by Huntington’s disease (HD)? If so, you may be able to participate in a research study that is collecting data in an effort to improve understanding and treatment of Huntington’s disease (HD).

Huntington Disease

Other Brain and Nervous System

AGE: 18 and up

VISITS: Once per year

LOCATION: Kaufmann Medical Building Oakland

COMPENSATION: Travel Reimbursement

RELATED RESEARCH AREAS:

Genetic Disorders