A Magic Tool for the rest of us.
Suppose you discovered a Magic Cube, A black box you could consult to check on your MPN status.
Answer a few simple questions, shake the cube and up pops the answer. More than just a random answer. What you’ll get is medical science’s best shot. Gold standard assessment and current research papers rolled into one.
After three years in field use and nearly a quarter million page visits we’re updating the Magic Cube and need your REVIEWS…Head for http://www.mpn-magic.com for a look. What could be improved? What information would you like to see included.
Basically, how can we make MPN-MAGIC easier to use and accessible to patients, caregivers and healthcare provides?
Please put your thoughts in the COMMENts box,below or drop us a line at ourMPNforum@gmail.com .
Input for the original Magic Cube was compiled and discussed by a blue ribbon taskforce of ten world class specialists validated by the direct experience of participating patients and caregivers.
The first focus of the Magic Cube was to help myelofibrosis patients figure out the best time for stem cell transplant, not too early and definitely not too late. Over time validated clinical scales were added to help assess risk for the chronic MPNs, essential thrombocythemia and polycythemia vera.
How it works
Answer a few clinically validated questions, click the completion button and out pops a traffic signal – Green you’re ok, Yellow take care, and Red time to act. Each result has accompanying text. In a way it’s like an on-line consultation with a team of expert specialists.
The tool is formally called the MPN Assessment Graphic Interactive Calculator and is available, free of charge with no tracking, cookies or other tracking devices.t www.mpn-magic.com.
Production costs of the MAGIC cube were covered by the MPN Research Foundation and MPNforum.
The MAGIC has been enthusiastically adopted by patients and caregivers and naturally evolved into a tool for all MPNs, incorporating new risk assessment scales and a thick package of papers, links and background materials. Today MPN-MAGIC includes the Dynamic International Prognostic Scoring Systems as well as the MPN Symptom Assessment Forms. There are links to transplantation risk assessment guides, other risk assessment tools and a comprehensive descriptive list of known MPN mutatons