PV Reporter was created to fill a gap in the MPN patient community providing “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 internal or external search capabilities. PV Reporter solves that problem with MPN Search – retrieving exactly the information you are looking for!
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 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 your 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.
First class 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.
- Polycythemia Vera Resources
- MPN Patient Conferences and Presentations
- Additional MPN Resources
- Facebook Groups – first hand “shared knowledge” and patient support (request to join)
- Online Support Groups – discussion list for patients, caregivers, researchers and physicians (subscribe via email)
MPN News Feed
The 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.
The Blog Page provides relevant news items, research reports, “‘personal stories”, presentations, clinical trials and delivers information that will be useful to you, the patient, or caregiver. For 2014, 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
MPN 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 2014 (new page)
- Polycythemia Vera Clinic Trials
- Living a Healthy Lifestyle with Myeloproliferative Neoplasms
- PV 2012 update
- Top 10 Tips for Battling the Fatigue Associated with MPNs
- Patients discuss living with Myelofibrosis, Polycythemia Vera and Essential Thrombocythemia
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
- Open to suggestions and volunteers – drop me a note
- Don’t abandon the sites you know and love
- Advocating for Informed Patients making better healthcare decisions
Growing Numbers of Patients
As 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).