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Study ID #:  IRB-17-01735

Erythropoietic Protoporphyria: Delayed Diagnosis

Sajel Lala, MD FAAP
Comprehensive Porphyria Diagnostic and Treatment Center
Icahn School of Medicine at Mount Sinai
Department of Genetics and Genomic Sciences
1428 Madison Avenue, New York, NY 10029
Office: 212.241.4024

The purpose of this research study is to learn more about the delayed diagnosis in Erythropoietic Protoporphyria (EPP) patients so we can increase awareness in the group of physicians most likely to see these patients. You are being asked to take part in a research study because you or your child has been diagnosed with 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.
If you agree to take part in this research study, you will be asked to fill out a short survey regarding your, or your child's, diagnosis of EPP. Your participation in this survey will take less than 5 minutes. There are no follow-up surveys. We expect that about 100 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. If you are younger than 18 years old and have EPP, your parents can answer the questions regarding your diagnosis of EPP on your behalf.

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

·         Having someone else find out that you were in a research study and potentially losing confidentiality of the data.

To protect your identity as a research subject, no identifiable information will be collected, 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 Sajel Lala, MD FAAP at 212.241.4024 (or You can also call the Program for the Protection of Human Subjects Office at 212-824-8200.

This project was determined to be exempt from federal human subjects research regulations.

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