CURRENT STUDIES THAT MAY INTEREST YOU


Developing Educational Materials for Adults with Down Syndrome

Do you have Down syndrome or are you a caregiver for someone with Down syndrome? If so, you may be able to participate in a research study to help gather feedback about how people in the Down syndrome community feel about common research procedures. This study involves completing one online survey. Some participants may also be invited to participate in a phone interview.

Age Range
AGE:   18 and up

Duration DURATION:  Up to 6 months
VISITS:  1 online survey & 1 phone call
Location LOCATION: 

Online & By Phone
Compensation COMPENSATION: 

$20 for completing phone interview

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.

Age Range
AGE:   18 and up

Duration DURATION:  About 45 minutes
VISITS:  No in-person visits
Location LOCATION: 

By phone
Compensation COMPENSATION: 

None

The VWD Minimize Study – Ages 18-45

Are you a female aged 18-45 who has been diagnosed with Von Willebrand Disease (VWD)? Do you experience heavy menstrual bleeding? If so, you may be able to participate in a research study to compare two different treatments for VWD. This study involves 4 visits over 24 weeks and one baseline blood draw. Compensation is provided.

Age Range
AGE:   18 - 45

Duration DURATION:  24 weeks
VISITS:  4
Location LOCATION: 

Hemophilia Center of Western Pennsylvania – Boulevard of the Allies - Oakland
Compensation COMPENSATION: 

$100 per visit (up to $400)

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.

Age Range
AGE:   18 and up

Duration DURATION:  45 minutes
VISITS:  1 visit or phone call
Location LOCATION: 

By phone

Sleep Apnea After Tonsillectomy – Young Adults ages 18-21 with Down Syndrome

Adults aged 18-21 with Down syndrome who have sleep apnea after a tonsillectomy are needed for a research study. The purpose of this research study is to find out if a surgically implanted nerve stimulator called The Inspire® System is safe and effective in treating sleep apnea. Study involves at least 9 visits over 1 year.

Age Range
AGE:   18 - 21

Duration DURATION:  1 year
VISITS:  9 visits
Location LOCATION: 

UPMC Children’s Hospital of Pittsburgh

Neurodegeneration in Aging Down Syndrome (NiAD)

Adults with Down syndrome ages 25 and up needed to participate in a research study to help learn more about the risk and development of Alzheimer’s disease and dementia in people with Down syndrome. Participation involves four visits over a four year period. A caregiver must be present at each visit. Compensation provided.

Age Range
AGE:   25 and older

Duration DURATION:  4 years
VISITS:  4 visits
Location LOCATION: 

University of Pittsburgh
Compensation COMPENSATION: 

Up to $1,100 + travel expenses

Biliary Atresia Study

Are you age 18 or older with a diagnosis of biliary atresia? Have you had the Kasai procedure (surgery to improve bile flow)? If so, you may be able to participate in a research study to learn more about the long term health of patients who have had the Kasai procedure. Participation by parents is voluntary. Compensation for transportation provided.

Age Range
AGE:   18 and up

Duration DURATION:  Varies
Location LOCATION: 

UPMC Children’s Hospital of Pittsburgh - Lawrenceville
Compensation COMPENSATION: 

Yes


RELATED RESEARCH AREAS:
  Genetic Disorders