Study Details
Study for People with Acute Hepatic Porphyria
(IRB#: IRB_00144599)
Acute hepatic porphyria (AHP) is a serious, rare, genetic disorder, that can be life-threatening and harm a person's quality of life. This study will collect data over time to see how the disease evolves. Participation requires attending routine care doctor visits and sharing medical records. AHP data will be collected at yearly doctor visits. Participants will complete a survey at yearly doctor visits. Participation lasts about 5 years.
- All genders
- Over 18 years old
- Volunteers with special conditions
- From Home
- Paid
Who can participate?
Gender: All genders
Age: Over 18 years old
Volunteers: Volunteers with special conditions
Location: From Home
Inclusion Criteria
- Ages 65 years and older
- Diagnosed AHP
- Able to attend yearly regular care doctor visits
Exclusion Criteria
- Currently enrolled in another clinical trial
Will I be paid for my time?
Yes
IRB#: IRB_00144599
PI: Charles Parker
Department: HEMATOLOGY\BMT
Approval Date: 2021-09-01 06:00:00
Specialties: Hematology/BMT