Researcher: Hetanshi Naik, PhD, CGC

Address: 1425 Madison Ave, 3rd floor, L3-70C

Phone: 212-659-8512

The purpose of this research study is to see whether people with Erythropoietic Protoporphyria (EPP) use Complementary and Alternative Medicines (CAMs) and cannabis to alleviate their EPP symptoms. You are being asked to take part in a research study because you have EPP.

Being in a research study is completely voluntary. You can choose not to be in this research study. You can also say yes now, and change your mind later. Deciding not to be in the research study, now or later, will not affect your ability to receive medical care at Mount Sinai Medical Center or any of the Porphyrias Consortium sites.

If you agree to take part in this research, you will be asked to complete the following survey about your CAM and cannabis use. Your participation in this study will take about 30 minutes. We expect that about 200 people will take part in this research study.

You can choose not to answer any question you do not wish to answer. You can also choose to stop taking the survey at any time. You must be at least 18 years old to participate. If you are younger than 18 years old, please stop now.

The possible risks to you in taking part in this research are:

§ Feeling uncomfortable due to the nature of some of the questions

§ Having someone else find out that you were in a research study

§ Loss of confidentiality of data

The possible benefits to you for taking part in this research are:

§ There is no direct benefit to you, but your participation may benefit future EPP patients by learning of other methods to treat symptoms

To protect your identity as a research subject, the research data will not be stored with your name, and the researcher(s) will not share your information with anyone. In any publication about this research, your name or other private information will not be used.

If you have any questions about this research, please contact the Researcher at 212-659-8512 or Hetanshi.naik@mssm.edu. You can also call the Program for the Protection of Human Subjects Office at 212-824-8200.

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