From the Blog of Lindsey Whyte, myMPN Project Manager
Her full blog is here
From the MPNforum: “What is a Patient Registry?”
The MPN Research Foundation page on history, aims, and support of the myMPN
I began to understand the disconnect between the patient experience and the scientific process being undertaken in the labs and universities around the world. In cases where a disease progresses slowly or where there may be triggering events that cause progression, are there ways that patients can help the scientific process along?
Every day decisions are made in pharmaceutical companies, university laboratories and research foundations like the MPNRF on where to allocate resources and personnel. Why shouldn’t the patient community have a greater say in this process? What we needed was a tool to gather individual MPN patient experiences, aggregate the data of many patients and share meaningful outtakes with researchers to focus their efforts and move the process of drug discovery and approval along more quickly.
Through the recently launched registry myMPN the MPN Research Foundation provides patients with an opportunity to share information about their day to day experience with an MPN with researchers. First, an introductory survey collects basic demographic, diagnosis and treatment information for the patient. The “How do you feel today” survey records symptom data in real time and is available to be taken as often as a participant wants. So if a patient feels great one day, they can report that but then when they feel not so great the next day, they can complete a new HDYFT survey.
The registry tool was designed with long term data collection and natural history study objectives in mind but also has some great functionality and convenience. Aggregated with data from others, a single patient’s experience can make a meaningful difference in the research community! For the user, it will become a repository for medical records as well as a journal or diary where patients can record how they are dealing with fatigue, depression, itching and other common symptoms from day to day. When it comes time for a doctor visit, myMPN offers participants the ability to download their records and survey responses to take with them to the appointment. In the year ahead, enhancements to myMPN’s platform will even enable patients to securely upload medical records and test results to their registry profile.
How can you help? If you haven’t already done so, please join us on myMPN (www.mympn.org) to make your data, your experience with an MPN, count! If you have already set up a profile, be sure to complete your surveys and keep coming back regularly to tell us How do you feel today? and report any recent health events. And please be sure to share with us any feedback you have and pass the word along to other patients you know who may not already be participating in myMPN!