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Longitudinal Study Underway! We still need YOU!

Longitudinal Study Underway   The Porphyria Longitudinal Observational Research Project is underway.  The objective of this protocol is to conduct a five year, multidisciplinary investigation of the natural history, morbidity, and mortality in people with porphyrias.  In addition, the purpose is a long-term follow-up study of a large group of patients with the various porphyrias, which will provide a better understanding of the natural history of these disorders, as affected by available therapies, and to aid in developing new forms of
treatment.  You have the opportunity to be part of this important project  and help advance research by
answering the most important and often perplexing questions about porphyria. As part of the research,
the patient volunteers will be followed longitudinally for long term survival, development of disease complications and outcomes of commonly used treatments, as well as more advanced treatments, such as liver or bone marrow transplantation.  Researchers will seek to identify biochemical features (biomarkers) that may predict future symptomatic episodes so that interventions can be initiated before symptoms develop.  The patients enrolled in this study will also be a source for other studies, including mechanistic investigations and clinical trials.

The questions researchers want answered include:
a.) In a longitudinal cohort, what is the prevalence of specific morbid indicators of disease severity, including neurovisceral and cutaneous manifestations, levels of porphyrin precursors and porphyrins, quality of life, long term effects on the liver, kidneys and other tissues, and case-fatality associated with the various forms of porphyria?
b.) What are the relationships between disease severity and progression and various biomarkers-biological characteristics, such as genotypes, causative and contributing endogenous and environmental factors and levels of porphyrin precursors and porphyrins?  
c.) What is the safety and efficacy of currently used and new therapies for the porphyrias, especially in the long term?


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


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Nerve Pain WHAT IS NEUROPATHIC PAIN? Neuropathic or nerve pain (NP) is a long-term or chronic pain disease that results from nerve damage. It can be caused by different diseases or conditions. Worldwide nerve pain affects as many as 26 million people. Neuropathic or nerve pain may affect larger areas of the body or it can be restricted to a smaller area, in this case it is called localized neuropathic pain (LNP). WHAT CAUSES NEUROPATHIC PAIN? Neuropathic or nerve pain may occur in the absence of an obvious visible cause (e.g. an accident, an injury, a chemical burn). There are several external situations that can directly damage nerves and lead to neuropathic pain, such as: Amputation of a limb (phantom pain, stump pain)Surgery (scar pain, post-surgery pain)Trauma or accident Neuropathic pain is also a common complication of other diseases, including nerve damage after shingles or herpes zoster infection (postherpetic neuralgia or PHN), nerve damage after HIV infectio…


GLOBAL PORPHYRIA ALLIANCE The APF is proud to support our members that live across the globe. Many countries around the world have developed organizations to support their local communities. We hope that enjoy the same opportunity to communicate with one another, develop friendships, and learn about porphyria. Here are links to patient advocacy groups worldwide that offer support to individuals impacted by porphyria. Argentina: Centro de investigaciones sobre porfirinas y porfirias | More informationAustralia: Porphyria Association, Inc. | More informationBrazil: Associação Brasileira de Porfiria | More informationCanada: Canadian Association for Porphyria | More informationColombia: Fundación Colombiana Para La Porfiria | More informationDenmark: (Porphyria Association Denmark)Denmark: (Danish Porphyria Support Group)England: British Porphyria AssociationFinland: Finnish Porphyria Support Group France: Association Française des Malades Atteints de Por…