The rockefeller university

What is the International Fanconi Anemia Registry?

Study title: The International Fanconi Anemia Registry (IFAR)

Principal Investigator: Agata Smogorzewska MD, PhD

Institution: The Rockefeller University

What is the purpose of the IFAR?

The IFAR aims to study the nature, diagnosis, and treatment of individuals with FA. We hope that information collected in this study will help researchers better understand FA, which can then directly benefit individuals and families affected by FA. In addition, we seek to determine the genetic cause of FA for each participating family and study tumors that develop in Fanconi anemia patients.

Who is eligible to participate in the study?

Anyone with a diagnosis of Fanconi anemia or with Fanconi-like symptoms is eligible to participate in the study. We try to enroll an individual with FA (or FA-like symptoms) and his/her parents at the same time, whenever possible.

Interested in Participating?

To get involved, you should contact our study coordinator. We will review the study with you in more detail, arrange for you to sign the necessary paperwork if you choose to participate and schedule an appointment at The Rockefeller University Clinical Research Center where we will collect your or your child’s samples.

What happens during the study?

The researchers doing the study will collect information about your/your child’s medical history, genetics, clinical course, blood test results, and treatment relating to your/your child’s diagnosis of FA. As part of your participation in the study, you/your child will be asked to give a DNA sample, usually in the form of a blood sample. The researchers will use this sample to do testing in the laboratory to better understand the causes and symptoms of FA. The tests done in this study are done in a research laboratory so need to be confirmed in a clinical laboratory before being released to you or your doctor. We will work with your/your child’s doctor to make this process as smooth as possible.

How do I get involved?

To get involved, you, your doctor, or your child’s doctor should contact our study coordinator. Contact information can be found on the back page of this brochure. She will review the study with you in more detail and arrange for you to sign the necessary paperwork if you choose to participate. She will also work with your doctor to arrange for the appropriate medical history and samples to be obtained.

What can I do if I am already enrolled in the IFAR?

First and foremost, thank you for your participation in the IFAR. We could not do this study without you. But we still need your help! Please contact us if:

You/your child have a doctor’s appointment, blood work, or have a procedure done

You have recently turned 18, or are a parent of an individual who has recently turned 18, as we need to update our consent forms

You have any questions about your participation in the IFAR or FA in general

Also, we are always interested in hearing all updates. As such, please stay in touch by phone, email, Facebook.

Questions 

Please contact:

Name: Agata Smogorzewska
Email: asmogorzewska@rockefeller.edu
Telephone: 212 327 7850