Skip to main content

Acute Porphyria Patients Are Needed For A Clinical Trial

Acute Porphyria Patients Are Needed For A Clinical Trial

University of Texas Medical Branch in Galveston, TX is recruiting patients with acute porphyria attacks.
During the trial, both glucose and hemin given by an infusion through the veins and are considered standard treatments for attacks of porphyria. Hemin has been on the market since 1983, and based on experience over the past 30+ years is believed to be the most effective treatment. But a good study to prove that it is effective has not been done, and this has impaired its acceptance by doctors and its availability to patients. This study is designed to provide the needed evidence that has not been available before.

The research questions are:
  1. To evaluate the effectiveness of glucose and Panhematin, compared to glucose alone treatment for acute attacks of porphyria
  2. To evaluate the safety of glucose and Panhematin, compared to glucose alone for acute attacks of porphyria.
This is a clinical trial, which means its purpose is to study an intervention or treatment. It is also a randomized, controlled clinical trial, which means there is a treatment group given active drug and a control group given an inactive placebo. In this study, both groups are also treated with glucose, which is what the Food and Drug Administration (FDA) currently recommends before treatment with Panhematin. The study will occur in the hospital, with planned follow up visits in the outpatient clinic or by telephone.

To be eligible to participate in this study, you must:
Be an individual with one on the following, documented by lab reports:
  1. Acute intermittent porphyria (AIP)
  2. Hereditary coproporphyria (HCP)
  3. Variegate porphyria (VP)
  4. Be in an acute attack of porphyria.
   Contact the Amy Chapman~ orAPF for enrollment and more details 713.266.9617.

"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!


The APF asked our Facebook friends for their top questions they would ask a porphyria expert.
 The following questions were submitted to Dr. Wang for his responses ... Q. Does EPP give us bad teeth? Also, do people with EPP get stomach pains or is that with the other porphyias? A. The porphyrin that accumulates in EPP patients is protoporphyrin IX, which does not cause discoloration to teeth or abdominal pain.
 The type of porphyria that leads to discolored teeth is Congenital Erythropoietic Protoporphyria. The porphyrias that lead to episodic abdominal pain attacks are the acute hepatic porphyrias. Q. I have EPP and I have a severe reaction on my hands and lips. Do I seek urgent care? Also, what can you even do when you burn your lips? A. The acute reactions to sunlight in EPP can be very severe and, unfortunately, there are not many effective options to treat the symptoms. Nonsteroidal anti-inflammatory drugs (NSAIDS such as ibup…