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.

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
7208: Evidence-based Assessment of Medication Sensitivity in Acute Hepatic Porphyria

This study is conducting research for the following disease:

  • Acute Intermittent Porphyria (AIP)
  • Variegate Porphyria (VP)
  • Hereditary Coproporphyria (HCP)
Study Name Diseases Studied
7210: Newer Direct-Acting Anti-Viral Agents as Sole Therapy of Porphyria Cutanea Tarda in Subjects with Chronic Hepatitis C

This study is conducting research for the following disease:

  • Porphyria Cutanea Tarda (PCT)

7202: Mitoferrin-1 Expression in Erythropoietic 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

7204: Clinical Diagnosis of Acute Porphyria

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

7206: Therapeutic Studies in Porphyria Cutanea Tarda

7207: Erythropoietic Protoporphyrias: Studies of the Natural History, Genotype-Phenotype Correlations, and Psychosocial Impact

7209: Effect of Oral Iron Therapy on Erythrocyte Protoporphyrin Levels in the Erythropoietic Protoporphyrias

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.