So often people living with a rare or chronic disease like Essential Thrombocythemia, Polycythemia Vera or Myelofibrosis don’t feel heard or seen – but your experience and unmet needs are coming through loud and clear when you participate in myMPN!
Did you know that we have over 350 users of myMPN in the U.S.? Over 100 participants have completed a HDYFT (“How Do You Feel Today?”) survey at least twice, and our most active user has completed an average of 1 HDYFT per week for a total of 19 surveys! Way to go! The heat map below shows where myMPN users in the United States are located:
We can see that California has the highest participation over 40 users, while Florida ranks second with nearly 35, and Texas and New York are both approaching 30 users. In the coming months, we hope to grow our participation rates nationwide and expand use of the registry in other native English-speaking countries.
What are we learning from the participant data?
The purpose of the initial data screens is two-fold: First, we want to be sure that the data being reported is representative of what previous MPN studies have indicated. This is an important validation of the tool to establish it as a means of for gathering reliable information. For example, the distribution of myMPN participants by initial diagnosis is 45.1% Essential Thrombocythemia, 39.9% Polycythemia Vera and 12.6% Myelofibrosis which is consistent with past epidemiological studies. When we look at treatments currently being used by patients, baby aspirin ranks highest with approximately 76% of myMPN participants, followed by hydroxyurea (42.1%), JAK inhibitor (17.6%) and interferon (6.0%). Almost 10% of participants report using no therapies at the present time. Again, these data are consistent with what is known about the MPN population.
The second purpose of our initial screens of the data is to establish a baseline from which we can grow the participation of the registry tool. We know that some patients are comfortable with, and even embrace, the notion that sharing their personal experience with their disease can help move research in MPNs forward, while others have a difficult time seeing the connection. We hope to build a compelling case for the registry that will encourage more participation including among people who are skeptical or hesitant.
Some patients have accessibility challenges either because they do not have a computer where they can enter their responses to the surveys, or perhaps they have language barriers that preclude them from participating. We hope that the participation in the registry over time will represent a cross-section of all MPN patients and we will begin to strategize on how to make that a reality. Similarly, from a gender perspective, we have a higher representation of women than men in the registry. While this is not consistent with the epidemiology of MPNs, it is commonly known that women are more likely than men to participate in online studies of this sort. Now we know that we need to try harder to engage male patients!
Your experience is meaningful
Data from our “How do you feel, today?” survey becomes more valuable each and every time a myMPN user fills it out. It allows us to see how the user’s experience changes from day to day and week to week simply by looking at the trends in their responses to various quality-of-life measures. By illustration, the table shows the burden of various common MPN symptoms, based on the data of approximately 400 surveys. This data is aggregate but clearly shows that skin problems (itchy or dry skin) are significant, with nearly a quarter of participants indicating they have had “very much” or “quite a bit” of a problem in the week preceding their completion of the survey. Aches and pains in the bones and dry mouth are also problematic, according to the responses.
If you’re not already participating in myMPN, what’s holding you back? Since our launch in September 2017, we now have well over 350 users in the US alone! From myMPN registry steering committee member Ruben Mesa, to our contacts at the FDA, everyone is excited at the prospect of our growing repository of real world data from MPN patients.