Research Studies
How do I learn more about current open studies?
Below you will find a list of current studies. Clicking on the link will take you to the study summary, which will provide you with all the important details for each study
How do I participate in a study?
Each study summary provides a list of hospitals or clinics where the study is being run. Using the contact information provided, you may contact any of these facilities in order to request participation in information about participating in a study
Study Name Diseases Studied 7201: Longitudinal Study of the Porphyrias This study is conducting research for the following diseases:
- Acute Intermittent Porphyria
- Hereditary Coproporphyria
- Variegate Porphyria
- Aminolevulinate Dehydratase
Deficiency Porphyria- Porphyria Cutanea Tarda
- Hepatoerythropoietic Porphyria
- Congenital Erythropoietic Porphyria
- Erythropoietic Protoporphyria and
X-Linked Protoporphyria7202: Mitoferrin-1 Expression in Erythropoietic Protoporphyria This study is conducting research for the following diseases:
- Erythropoietic Protoporphyria (EPP)
7204: Clinical Diagnosis of Acute Porphyria This study is conducting research for the following diseases:
- Acute Intermittent Porphyria (AIP)
- Hereditary Corproporphyria (HCP)
- Variegate Porphyria (VP)
7205: Measuring the Effects of Isoniazid Treatment on Erythrocyte and Plasma Protoporphyrin IX Concentration in Patients with Erythropoietic Protoporphyria This study is conducting research for the following diseases:
- Erythropoietic Protoporphyria (EPP)
- X-Linked Protoporphyria
The Rare Diseases Clinical Research Network will make every effort to enroll all the patients we can, but we cannot make any guarantees that we will be able to enroll everyone in a particular study who wants to participate.
