Monday, February 22, 2016
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!"
The following organizations have websites in English The American Porphyria Foundation has a very extensive website, including a section ...
How To Make The Perfect Salad APR 9, 2013 BY RECIPE REHAB Whether you’re a vegetarian, foodie, health-conscious mom, busy profess...
Accused of Being a Hypochondriac, Lisa is Finally Diagnosed with Acute Intermittent Porphyria- Global GenesAccused of Being a Hypochondriac, Lisa is Finally Diagnosed with Acute Intermittent Porphyria A swollen stomach...
Learning about Porphyria What is porphyria? What are the signs and symptoms of porphyria? How is porphyria diagnosed? How is porphyria...