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Studies

  Get Involved   >   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 a study.

 

Available Research

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 Protoporphyria
7203: A double-blind, randomized, placebo-controlled, parallel group trial on the efficacy and safety of PanhematinTM 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)
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)
7206: Therapeutic Studies in Porphyria Cutanea Tarda

This study is conducting research for the following diseases:

  • Porphyria Cutanea Tarda (PCT)
7207: Erythropoietic Protoporphyrias: Studies of the Natural History, Genotype-Phenotype Correlations, and Psychosocial Impact)

This study is conducting research for the following disease:

  • Erythropoietic Protoporphyria (EPP)
7209: Effect of Oral Iron Therapy on Erythrocyte Protoporphyrin Levels in the Erythropoietic Protoporphyrias

This study is conducting research for the following disease:

  • Erythropoietic Protoporphyria (EPP)
  • X-Linked Protoporphyria (XLP)

Past Studies

7202: Mitoferrin-1 Expression in Erythropoietic Protoporphyria

7205: Measuring the Effects of Isoniazid Treatment on Erythrocyte and Plasma Protoporphyrin IX Concentration in Patients with Erythropoietic Protoporphyria



Please Note: 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.