PNH - Your Path to Diagnosis Survey | Aplastic Anemia and MDS International Foundation

PNH - Your Path to Diagnosis Survey

Please participate in an important survey for patients with PNH

The Aplastic Anemia and MDS International Foundation (AA&MDSIF) is conducting an online research survey. The purpose of the survey is to help us better understand the path to PNH diagnosis and how the treatments you receive affect your life and the lives of those around you. We also want to know about what services and information you most value. Your answers will be used to improve our services and patient programs—and possibly how doctors treat PNH.

Your answers will be 100% confidential and will not be connected to you in any way.

The answers you and other patients provide will be carefully combined and analyzed to create an overall picture of how a PNH diagnosis and its treatment affect the lives of people with PNH. Data collection and analysis will occur in strict compliance with all institutional review board (IRB) guidelines and policies for research studies. The data will also be reviewed by members of the AA&MDSIF Patient Education Council and Medical Advisory Board to insure full compliance. The findings from this study may be presented or published by the AA&MDSIF.

What else do you need to know before taking the survey?

  • The survey is being sponsored by the AA&MDSIF.
  • It is open to all patients with a diagnosis PNH.
  • The survey should take you approximately 30 minutes to complete.
  • Our goal is to have over 100 patients take the survey.
  • The survey is 100% voluntary and anonymous.
  • No personal information will be asked from you at any time within the survey (such as your name, address, doctor’s name, credit card information, etc.).
  • There are no unforeseen risks or benefits to you.

Getting started:

  • You may complete the survey yourself. Patients may have a family member or caregiver assist them.
  • You can choose not to participate or you can stop this survey at any time, for any reason.

Your voice matters:

The survey will start by asking questions like your age and medical history as it relates to your PNH. Next, you will be asked to provide opinions about your path to your PNH diagnosis. You will then be asked to identify where you received your diagnosis and treatments for PNH. We suggest gathering medical records or information to have handy during the survey.

Begin the Survey

If you have any questions, please contact research@aamds.org.