Research Control: Interest Form

  • Interest Form: Support Porphyria Research as a Control Participant

  • Thank you for your interest in supporting porphyria research as a control participant.

    Some research studies need information from people without porphyria (controls) so results can be compared fairly to people with porphyria. For the comparison to be meaningful, controls are often matched to study participants by factors such as age, sex, race and ethnicity, and general health. For studies of cutaneous light sensitivity, matching may also include skin tone.

    This form helps UPA identify potential matches for future studies. Completing this form does not enroll you in a study. If you appear to be a potential match for a specific study, UPA may contact you to ask whether you would like your information shared with a research site.

    Thank you,
    UPA Team

  • Consent

  • I agree that UPA may contact me about research opportunities. If I am interested in a specific study, my contact information may be shared with that study team.*

  • Contact Information

  • Demographics

  • Birth Date*
     - -
  • What is your ethnicity?
  • What is your race (choose all that apply)?
  • What sex were you assigned at birth?
  • How do you currently identify your gender?

  • Porphyria and Other Medical Conditions

  • Do you have a type of porphyria?*
  • Do you have any blood relatives diagnosed or thought to have a type of porphyria?
  • Type of porphyria
  • Have you had genetic testing to assess if you have a porphyria-related gene?
  • Do you have any chronic medical conditions?

  • Skin and hair tone

  • What is the color of your skin (non-exposed areas)?
  • What is the natural color of your hair?

  • Study Participation Options

  • What type of study would you be potentially interested in? (check all that apply)

  • Thank you for your interest. 

    You are not alone on your porphyria journey. Please contact the UPA at info@porphyria.org if there is anything we can do to support you.

    If you would like to complete the interest form, please return to the previous page and consent.

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