Longitudinal Study of the Porphyrias

Study ID Alternative Stable ID Type
phs001278 Longitudinal

Study Description

This is an observational, longitudinal study of approximately 800 individuals with various types of porphyria. Those participants will be evaluated annually for 5 years, or longer if they agree.
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, and urine. The type of samples and amounts may vary from person to person, depending on the type of porphyria.
  • Giving permission for samples to be stored and used for porphyrias research.
  • Granting permission to obtain your medical records.
  • Providing information about your medical history and family history.
  • Completing a questionnaire about your porphyria symptoms and quality of life.

Archive Link Archive Accession
dbGaP phs001278

Who archives the data?

There are no publications available