Skip to main content

Join Research Studies!

Join Research Studies!

We are looking for patients volunteers to join The Longitudinal Study of the Porphyrias. Participation in this study is very easy. It does not require you to travel to the research site. The study involves a review of your medical records, completing comprehensive questionnaires about your symptoms and quality of life, and providing blood and urine samples. You will be working closely with porphyria experts and researchers.
The purpose of this long-term follow-up study is to provide a better understanding of the natural history of porphyrias, as affected by available therapies, and to aid in developing new forms of treatment.
We are also looking for volunteers to join A double-blind, randomized, placebo-controlled trial on the efficacy and safety of Panhematin. We are looking for patients with acute forms of porphyria: AIP, HCP or VP. This is a clinical trial, which means its purpose is to study an intervention or treatment. The study will occur in the hospital in Galveston, TX with planned follow up visits in the outpatient clinic or by telephone.
Patients are asked to come to the hospital as soon as possible after symptoms of an attack begin, because treatment is more effective if started early. Some patients, who have attacks that are regular and predictable, may come even before symptoms begin. The treatment the patient is given will be hidden (blinded) by using drapes and opaque containers so that participants and most of the staff do not know which treatment they are receiving. At least one pharmacist and one study nurse will know what treatment the participant is receiving, so we can be sure the treatment is properly prepared and safely administered.
Volunteering for research is the most important action you can take to change your future health because Research is the Key to Your Cure.  You can be a Medical Hero and join many patients, who gave some of their time to help find important answers leading to new and improved treatments and a cure.
In order to participate in a study, please contact us at the APF 866-APF-3635. Or contact the research coordinator at the closest study center to you; their information can be found here:

"Remember....Research is the key to your cure!"


Popular posts from this blog

Amazing patient advocacy....and needed media for this issue. Thank you Terri Witter!

Meet Shadow Jumper Mitchell Felts

Meet Shadow Jumper
Mitchell FeltsMitchell Felts, age 12 How old were you when you were diagnosed?
I was 9 Years old. Do you remember your first flare/reaction?
No, I do not recall my first flare & reaction. What did it feel like to you?
It was tingling bad on my skin. What things help you feel better? (cool water, ice, shade, bath, clothes)
It helps me when I use cold rags and ice packs on my skin. How long does it take before you start to feel better?
Sometimes, I start to feel better after the first day, but sometimes it takes 2-3 days or longer to feel better. What kind of clothing/trends do you wear when you go outside or in bad lighting?
I can use long sleeves, hats and umbrellas. What is your most favorite sport to play or watch? Do you play it inside or outside? During the day or at night?
I enjoy playing baseball late in the day and it feels great to play at night. What ways are you able to adapt to do certain activities outside?
I must cover up, its hot outside so I must take breaks to c…