PV Reporter

Introduction

PV Reporter was created to provide “easy access” to pertinent information on Polycythemia Vera (PV),  Essential Thrombocythemia (ET) and Myelofibrosis (MF).  These disorders are Myeloproliferative Neoplasms (MPNs), a closely related group of blood cancers where the bone marrow cells that produce the body’s blood cells function and develop abnormally.  If you are a newly diagnosed patient or researching MPNs, make PV Reporter your starting point.  While many existing MPN websites provide excellent content, they tend to be internally focused or lack external search capabilities.  PV Reporter solves that problem with MPN Searcha “custom search engine” retrieving exactly the information you are looking for!


In the Spotlight – Top Articles and Pages


MPN Search

The MPN Search page retrieves pertinent information from “trusted sources”, while leaving behind the mountains of disconnected data that a standard google search brings back.

MPN Search is a “custom search engine” that indexes research data, reports, stories, and news items from some of the best reference sources in the MPN World.

Sources include highly respected sites such as MPNforum, Blood Journal, MPN Research Foundation, Mayo Clinic and more.  If you want to research information on PV, interferon, phlebotomy, Dr. Silver, Essential Thrombocythemia (ET), Myelofibrosis (MF) or whatever, just click on MPN Search, type it into the search box and you will immediately be served the information you are seeking. Perhaps, the most comprehensive research tool on the web related to Polycythemia Vera, MPNs, ET, and MF, pulling aggregate data from “trusted authority sites”.


MPN Videos – 2017

MPN Video Showcase courtesy of Video Journal of Hematological Oncology

Celluar therapy: a key part of EBMT 2017

The potential of momelotinib against myeloproliferative malignancies

Myeloproliferative neoplasms in pregnant patients

Integrative therapy: beneficial for MPN patients?

Yoga: an effective approach to improving MPN symptoms

Interferons: a promising potential therapy for MPN

Understanding data: a collaboration between multidisciplinary groups

Social media: creating a link between patients and researchers

Emergent therapeutic strategies in the field of myeloproliferative malignancies

Update on clinical trials for myeloproliferative neoplasms

Progress in MPNs

How can pregnancy in myeloproliferative neoplasms (MPNs) be managed?

Second line myelofibrosis treatment – the potential of JAK2 inhibitor NS 018

Patient and physician perceptions on the symptomatic and economic burden of MPNs

PROUD PV and MPD RC 112 trials of interferon alpha vs hydroxyurea for MPNs

Ongoing trials of ruxolitinib, momelotinib and imetelstat in myelofibrosis

Results for trial of LCL161 for PMF, post PV MF, and post ET MF patients

Safety of treating myelofibrosis with ruxolitinib – results from JUMP trial

The importance of non pharmacological interventions in myeloproliferative neoplasms

Analyses from COMFORT trials of ruxolitinib for myelofibrosis

MPN highlights from EHA 2016

Ruxolitinib for myelofibrosis: combinations and dosing strategy

MPN Landmark studies: looking at the disparities in perceptions of disease and treatment preferences

Results of PERSIST 1 PERSIST 2 studies of pacritinib vs best alternative therapy in myelofibrosis

The stories behind the advances in polycythemia vera

MPD RC 112 trial of pegylated interferon alpha 2a for polycythemia vera essential thrombocythemia

Interim results of pegylated interferon alpha 2a for polycythemia vera and essential thrombocythemia

MAJIC trial results: ruxolitinib compared to best available therapy for essential thrombocythemia

The importance of patient registries

What s new in myeloproliferative neoplasms?

What is the unmet medical need of patients with PV and ET?

The current research on momelotinib for myelofibrosis

Current research into JAK inhibitors specifially ruxolitinib, pacritinib, and momelotinib

The application of JAK inhibitors in the treatment of polycythemia vera and myelofibrosis

Highlights from ASCO 2016 for myeloproliferative neoplasms

Updates on PERSIST 1 trial of pacritinib for myelofibrosis

New approaches to treat myeloid neoplasms

What s next for MPN?

How to manage MPN patients

Indiviudalizing care for MPN patients

Development and application of virus specific T cells

The 5 year update on the COMFORT II clinical trial of ruxolitinib

Myeloproliferative neoplasms and pregnancy

Next generation sequencing data on myeloproliferative neoplasms

Panobinostat in myelofibrosis

COMFORT II clinical trial: the 5 yr results

Final analysis of the phase 4 EXELS trial in high risk patients with essential thrombocythemia

Ongoing data from the phase 3 RESPONSE trial of ruxolitinib for polycythemia vera

Results of the Phase III PERSIST 1 trial of pacritinib for myelofibrosis

Study design for PERSIST 2 and other upcoming trials of pacritinib

mpn videosMPN videos include patients discuss living with MF, PV and ET,  Dr. Silver discusses Interferon and video updates from MPN Research Foundation.  Additional videos provide detailed insight into the following areas:

  • MPN Videos 2017 
  • Polycythemia Vera Clinic Trials
  • Living a Healthy Lifestyle with Myeloproliferative Neoplasms
  • Top 10 Tips for Battling the Fatigue Associated with MPNs
  • Patients discuss living with Myelofibrosis, Polycythemia Vera and Essential Thrombocythemia

MPN Resources

best resourcesNumerous MPN Resources can be found here.  Concise listings with one click, easy access.  A growing list with helpful research tools, support groups and information for all MPN patients.  This page offers a broad selection of resources to continue your research.


MPN News Feed

MPN rss feedThe MPN News feed provides regular, automated updates on the latest happenings in the MPN World.  Fresh content served with a brief summary, date and news source.  Check it out on a regular basis.  Please be patient as this page draws information from numerous sources.


Blog Page (over 75 articles)

MPN blogThe Blog Page provides relevant news items, research reports, “‘patient stories”, presentations, clinical trials and delivers information that will be useful to you, the patient or caregiver.  It has been enhanced to include:

  • Featured image (main picture from article)
  • Full width page for content preview
  • Numbered pages for better navigation
  • Improved readability

E-Patients

doctor with stethoscope in laptopMPN Patients can become empowered patients or E-Patients by embracing online patient communities, state of the art research tools and shared experiences.  Armed with the proper information, you can go from a patient intimidated by your doctor to someone who demands to be a partner in medical decision making.  Do you research, the more you learn about your illness and appropriate treatment options, the better armed you will be in advocating for better care.  Know what questions to ask your physician.

Philosophy for Patient Care – Educating the patient is essential, so the patient can guide the physician to meet his or her needs.

ALWAYS get copies of your CBC (blood panel), tests, lab results and records for yourkeep your own lab results files at home.  Don’t be shy, this is your information and it is crucial for you to learn and understand the test results so you can be properly prepared for future appointments.


 Site Goals & Notes

  • Make PV Reporter the starting point for your research.
  • Social – click the “sharing is caring” buttons at the bottom of each page and help us spread MPN Awareness.
  • Well Informed Patients are empowered to make better healthcare decisions.
  • Want to share your story? – Drop us a note.

 Growing Numbers of Patients

MPN by the numbers picAs the following infographic provided by MPN Research Foundation shows the MPN patient population is growing. Not that anyone wants to be a “member of the group”, but if you are, the positive takeaway is that MPNs are becoming more visible in the medical community and new drug trials are in the pipeline.  Click here for the infographic – MPN by the Numbers.

As a result of the growing number of patients, it is my belief that comprehensive resources like PV Reporter are needed to help MPN patients research and better understand their own Myeloproliferative Neoplasm (PV, ET, MF).


MPN Blood Cancer Awareness


Check out more resources at MPN Cancer Connection!Click here
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