To hear about the latest clinical trials for PSC and answer calls to participate in interventional and observational studies, use the form below to join the PSC Clinical Research Network – PSC America, for studies of adult PSC, or PSC America Peds, for studies of pediatric/teen PSC.

Joining the network today will mean only giving us your name and email address so that we can contact you when services, trials, and collaborations that you might be interested in become available.  We will not share your information with anyone.

Giving us your zip code places you on the network map so that areas of network growth are visible to all stakeholders. You can choose to appear anonymous on the network map.

Right now this Clinical Research Network will facilitate faster and bigger enrollment in pharma-sponsored clinical trials and research at academic medical centers.  In the near future, it will also allow patients to directly share their clinical data with SJI internal researchers and collaborators if they would like to do so.

Add a new location

PSC Patient
PSC Supporter
PSC Clinician
PSC Research
PSC Pediatric Patient
PSC Parent
PSC Caregiver
PSC Family Member
Clinical Researcher
Basic Researcher
Clinical Immunologist
Other Clinician


7 Comments on “Join the PSCAmerica Clinical Research Network”

  1. Melissa Egert

    I was diagnosed with PSC in 1997. To date, I have only had two cholangitis episodes and am doing fairly well. Recent tests at Mayo Clinic showed improvement in both bile duct narrowing and blood work. Amazing. I know that I am lucky – at this moment.
    Thank you for your efforts.

  2. Kimberly

    Symptoms of PSC started in my early 20’s and I’ll turn 53 soon! I am fortunate to have slow progression. Although I’ve been a proactive patient & participated in a few research studies along the way. I have 2 teenage boys & wonderful husband & family support. Mild HE has set in & I feel myself changing now that I have cirrhosis. The future is uncertain but I am SO THANKFUL for SaveJon & PSC Partners for their relentlessness in finding a cure!!

  3. Carl Hein

    I was diagnosed with PSC in June 2014 but have had crohn’s colitis for 50 years. I got the flu and diarrhea my junior year in college. The flu went away but the diarrhea didn’t. The gastroenterologist that treats me said my biliary tree has numerous strictures and also a nonmalignant tumor. I am 71 years old.

  4. Elizabeth Ketchem

    I am not lucky. I was diagnosed with PSC 10 years ago. Was told nothing about trials or follow up or cancer. Last October I was diagnosed with CCA. Stage 4 inoperable. A major research institution did nothing to advise me of anything about follow up or possibilities of cancer. They said nothing. My time left here is determined by God but the doctors are saying months. I am 45, a wife, mother of two beautiful teenagers and a believer in Jesus. I wish UAB had followed up once at least in ten years. I might not be sitting under a death sentence.

  5. Barbara Harrelson

    I was diagnosed with crohn ‘s disease in my late twenties. I did fairly well until I had to have part of my
    Colon removed. I had a accident about six years ago. They noticed I had high liver enzymes and my
    Iron levels were off the cart. Then they started looking at my liver. I was very ill and they tried to open
    the bile ducts. They told my family I would need a transplant.
    At this point I am visiting a transplant hospital once a year to be checked out.
    I have test run every six months by my Gi Doctor and he monitors my enzyme levels.
    I feel I am very blessed at this time to be doing so well. I just wonder when it will all go south again.

  6. Lynann Casagrande

    I was originally referred to a liver specialist in October 2013, when my rheumatologist noticed the continued elevation of liver enzymes.( I see the rheumatologist for the autoimmune disease Sjogren’s syndrome). I was officially diagnosed August 2014. Currently, I am going through evaluation to be listed for transplant. My liver doctor says my PSC is very aggressive and would like me to be transplanted before I am too sick. It was quite a shock when initially I thought I had 7-12 years before transplant. I never expected this at age 5o.

  7. Linda

    I was told this year I have the IGG4 Disease. Still don’t know how they are going to treat me yet.

Leave a Reply

Your email address will not be published. Required fields are marked *