PCORI survey

September 3rd, 2014

MPN Research Foundation is partnering with the Patient-Centered Outcomes Research Institute (PCORI) and the American Institutes for Research (AIR) to conduct a survey of adults with rare and/or chronic conditions. This is to help us understand your views about medical research and your interest in helping researchers decide what topics are studied. PCORI is an independent, nonprofit organization that was established in 2010 by Congress to fund research that will provide patients, their caregivers, and healthcare providers with the evidence-based information they need to make fully informed decisions. PCORI will use the information from this survey to decide what research to fund and make sure that it addresses topics that are important to you and other people living with rare conditions. Adults with rare conditions are a part of this national study. In the future, PCORI will also be surveying family caregivers of children with rare conditions. Since we serve adults with MPNs we have agreed to assist with this survey by sending you this invitation to participate.

As a member of the MPN Research Foundation, you are eligible to participate in this survey if you can say yes to all of these questions:

1. I am 18 years old or older
2. I live in the United States
3. I have a diagnosis of a rare condition/disease.

If you said yes to all of these then we would invite you to participate in this online survey:


Si gusta tomar la encuesta en español, favor de visitar: http://goo.gl/7OQLFp

All of your responses are private, meaning we will not trace the answer back to you or make your answers public. They will only be used for this study. Your participation is completely voluntary and you do not have to answer any questions that you do not want to answer. If in addition to participating, you want to give AIR your email address, you will receive a $5 Amazon.com credit to apply to any future purchase.

If you have any questions, please call the PCORI Survey Help Desk at (844)-509-9653 between 9 a.m. and 5 p.m. Eastern Time, Monday through Friday, or you can send your question via email to PCORIsurvey@air.org.

If you have questions about your rights as a participant, contact AIR’s Institutional Review Board (which is responsible for the protection of project participants) at IRB@air.org toll free at 1-800-634-0797 or c/o IRB, 1000 Thomas Jefferson Street, NW, Washington, DC 20007.

Thank you,
MPN Research Foundation

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