Ongoing Studies //

See below for a description of ongoing studies that are enrolling patients. For each study there will be a description of the research, information on how to get involved, a link to the study's online eligibility survey (if applicable), a link to the study's website (if applicable), and a study contact in case you have questions.

MYHEALTH: Mobile Myeloproliferative Health Empowerment Tool

 

Description:

The MYHEALTH: Mobile Myeloproliferative Health Empowerment Tool is a Pilot Study led by Dr. Krisstina Gowin with the University of Arizona. This is a study utilizing a mobile global wellness application (app) MY Wellness Coach created by the University of Arizona Andrew Weil Center for Integrative Medicine. This study will be enrolling patients diagnosed with an MPN. The study will take 12 weeks where the participant will be asked to utilize the mobile app and complete quality of life questionnaires at 2 separate points in the study. The information gathered will be used to try and develop broader resources for MPN patients to assist with symptom burden and overall health. 

How to Get Involved:

To get involved, see if you are eligible by clicking on the eligibility survey link below. You will receive an email from study staff with your eligibility survey results as well as further instruction if you are eligible.

Website:

Not applicable.

Eligibility Survey: 

uarizona.myhealthstudy

The NUTRIENT Study

Description:

The NUTRIENT study evaluates the effects diet among participants who have been diagnosed with an MPN. Studies indicate that a healthy diet may reduce inflammation in the body.  For individuals who have an MPN, this inflammation drives the disease course. Our hope is that altering the balance of inflammation in the body may help individuals to feel better and ultimately change the course of the disease by reducing the risk of blood clots, abnormal blood counts, and spleen size changes.

The first step of the NUTRIENT study is to determine whether MPN patients can follow a healthy diet with nutritionist counseling and education. During this study, participants will be asked to follow one of two healthy diets. The study lasts a total of 15 weeks and involves the following:

  • 4 in-person visits to Irvine or Orange with blood and urine samples collected each time. These can be scheduled whenever is most convenient for you.

  • 4 stool samples collected in your home

  • 1 in-person visit to a dietician, with 2 follow-ups via phone call over the next 5 weeks

  • 6 online surveys* about your symptoms via secure networks:

    • 2 in the first three weeks

    • 4 every 3 weeks in the following weeks

  • 6 online surveys* about your diet via secure networks:

    • 2 in the first three weeks

    • 4 every 3 weeks in the following weeks

 

*The online surveys can be replaced with surveys via phone call upon request.

How to Get Involved:

To get involved, see if you are eligible by clicking on the eligibility survey link below. You can also click on the website link and fill out the information on the website (seen to the right) to get more info on the study.

Website:

http://www.wearempn.org/interestedinenrolling/​ 

Eligibility Survey: 

https://uci.co1.qualtrics.com/jfe/form/SV_6opxXhaa8sqztSB

MPN Family Study

Description:

Myeloproliferative neoplasms (MPNs) can many times run in families but researchers don't yet know why. The central goal of our MPN family study is to identify risk factors that may predispose some people to develop an MPN. This study will allow us to understand the genetic factors underlying familial MPNs and provide a potential solution to reduce the risk of MPN in family members.

 

We are seeking participants who have family members with two of more MPN patients. We would like to have the participation of both the MPN patients and at least one unaffected family members to volunteer in this study.

This study consists of:

·         A small blood donation (50ml)

·         A survey of your family clinical history

How to Get Involved:

If you belong to a family that meets the criteria above, we encourage you to participate! MPN families are the key to uncovering what predisposes people to developing MPN and with your help we can unlock these important questions. To learn more about participating in this study, please go to the website below or get in touch with the email below.

Website:

http://www.wearempn.org/why-does-mpn-run-in-families

Study Contact:

Email: wearempn@gmail.com

Contact for general questions:

Ryan Eckert, MS, CSCS

Research Coordinator

Mays Cancer Center

UT Health San Antonio MD Anderson

eckertr@uthscsa.edu

 

© 2018-2019 by The MPN QoL Study Group