Research Control: Interest Form

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
YesNo

Contact Information
Name*

First NameLast Name
Email*
example@example.com
Phone Number*
Mailing Address (used by UPA to contact you by mail about research opportunities)*

Street Address

Street Address Line 2

CityState / Province

Postal / Zip Code

Study Participation Options
Online surveys onlyReview of medical record (if applicable)Blood drawSaliva or cheek swab for geneticsSkin biopsy (for example, a small punch biopsy under local numbing medicine)I am not sure, contact me with details
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.
I would like to join the United Porphyrias Association to receive news, information and updates.
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