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

Patient Resources //

Access to high quality and reliable sources of information are so valuable to the MPN patient. Here, we share with you a range of resources that are beneficial for both patients and caregivers. As a group, we publish a Quarterly Patient Report that aims to share our work and engage the MPN patient community. Information on how to sign up to receive these reports as well as links to our prior issues of this report are included on this page below. In addition to our group's Quarterly Patient Report, we also provide links to other resources that can be useful for both the MPN patient and their caregiver. See below for a range of web page links that can be informative and educational for you as an MPN patient or caregiver. We often collaborate with a range of MPN patient research and advocacy organizations, such as the MPN Research Foundation and the MPN Advocates Network, and share links to their websites on our Home Page as they too provide valuable information for MPN patients and caregivers.

Links to Useful Resources //

UT Health San Antonio Education for MPN Patients

Drs. Ruben Mesa and Robyn Scherber of the Mays Cancer at UT Health San Antonio MD Anderson teamed up and published a series of videos outlining and describing key features and treatment of the three primary MPN sub-types. The links to each of these videos, as well as the UT Health San Antonio MD Anderson YouTube Channel where other useful MPN-specific videos can be found, are included below.

Myelofibrosis: https://www.youtube.com/watch?v=1nMyYPy2mNE

Polycythemia Vera: https://www.youtube.com/watch?v=SkTIK4zBT24

Essential thrombocythemia: https://www.youtube.com/watch?v=i9GbMohwHm0

UT Health San Antonio MD Anderson YouTube Channel: 

https://www.youtube.com/channel/UCpO6sdqmcfion86WEpNleMw

Patient Power

A wonderful resource for those looking to receive practical information and advice from cancer experts. Patient Power broadly focuses on all cancers, but has information specific to MPN patients.

Website: https://www.patientpower.info/ 

Email: comments@patientpower.info 

MPN Research Foundation's "my MPN"

In 2015 the MPN Research Foundation created the first ever patient registry for MPNs. Visit their website to learn about how to get involved.

Website: http://www.mpnresearchfoundation.org/myMPN-about

Leukemia & Lymphoma Society

​The Leukemia & Lymphoma Society (LLS) is the largest nonprofit in the world dedicated to finding a cure for blood cancers and to improve the quality of lives of patients through research, policy and advocacy, and patient support.

Website: http://www.lls.org/

 

National Comprehensive Cancer Network

The National comprehensive Cancer Network (NCCN) is a not-for-profit alliance of 27 cancer centers and aims at publishing treatment guidelines for doctors that treat various forms of cancer. NCCN published the first-ever set of guidelines for MPNs in 2018. The links to these guidelines as well as NCCN's patient resources can be found below.

NCCN MPN Treatment Guidelines: NCCN MPN Guidelines

NCCN Patient Resources: https://www.nccn.org/patients/

Quarterly Patient Report //

The Quarterly Patient Report is a brief report designed for MPN patients, providers, and caregivers. It is published 4x/year (every 3 months) and aims to share the work of our group as well as engage patients within the MPN community through sharing patient stories and practical information that will hopefully improve the lives of our readers. If you wish to receive this report on a quarterly basis, please subscribe to our email list by scrolling to the bottom of the site and entering in your name and email. You can see the tentative dates of our upcoming issues as well as view our most recent issues of the Quarterly Patient Report by clicking on the links below.

11/15/2021 - Volume 4 Issue 4

8/15/2021 - Volume 4 Issue 3

5/15/2021 - Volume 4 Issue 2

 

2/15/2021 - Volume 4 Issue 1

 

11/15/2020 - Volume 3 Issue 4

8/15/2020 - Volume 3 Issue 3

5/15/2020 - Volume 3 Issue 2

 

2/15/2020 - Volume 3 Issue 1

11/15/2029 - Volume 2 Issue 4

8/15/2019 - Volume 2 Issue 3

5/15/2019 - Volume 2 Issue 2

1/15/2019 - Volume 2 Issue 1

10/15/2018 - Volume 1 Issue 5

7/16/2018 - Volume 1 Issue 4

4/16/2018 - Volume 1 Issue 3

1/16/2018 - Volume 1 Issue 2

10/16/2017 - Volume 1 Issue 1