Below you will find a list of current studies with short summaries. Our next E-news will cover the second portion of the ongoing studies.
7201: Longitudinal Study of the Porphyrias
This study is conducting research for all types of porphyria. Participation in this project will include:
- Participating in annual visits or contacts.
- Providing samples, including blood, buccal cells (cells from inside of the mouth), saliva, urine and a skin biopsy. The type of samples and amounts may vary from person to person, depending on the type of porphria.
- Giving permission for samples to be stored and used for porphyrias research.
- Granting permission to obtain your medical records.
- Interview to provide information about your medical history and family history.
- Completing a questionnaire about your porphyria.
7203: A double-blind, randomized, placebo-controlled, parallel group trial on the efficacy and safety of Panhematin in the treatment of acute attacks of porphyria
This study is conducting research for the following diseases:
Acute intermittent porphyria (AIP)
Hereditary coproporphyria (HCP)
Variegate porphyria (VP)
The research questions are:
- To evaluate the effectiveness of glucose and Panhematin compared to glucose alone treatment for acute attacks of porphyria
- To evaluate the safety of glucose and Panhematin, compared to glucose alone for acute attacks of porphyria. To be eligible for the research you will have to have frequent and predictable attacks.
7202: Mitoferrin-1 Expression in Erythropoietic Protoporphyria
This study is conducting research for the Erythropoietic Protoporphyria (EPP).
This study will identify the characteristics of erythropoietic protoporphyria (EPP) in the blood. People with EPP have skin sensitivity to sunlight and occasionally develop liver disease. In this study, we hope to learn the nature of the characteristics of EPP in the blood because this may help explain the seriousness of the clinical features.
Please contact the APF for more information or to get enrolled in the studies 713.266.9617.
Upgraded Patient Packet
We also are working on upgrading patient packet. The new edition will include:
- Overview of all porphyrias
- Panhematin brochure
- APF Newsletter
- The APF membership information
- Letter from Desiree Lyon Howe to patients
- How to become an APF Member
- The list of all ongoing studies
"Remember....Research is the key to your cure!"