MYMPN: PATIENT REGISTRY
The purpose of the registry is several-fold:
1 – to gather critical data that will improve patient care and drive research
2 – to connect eligible patients with trials and other need-to-know information
3 -to strengthen the community of MPN patients by finding commonalities and sharing experiences
The common theme in all of this is empowering patients to change their prognosis. As MPN patients, many feel hopeless, powerless and alone. The registry aims to reverse that…to show patients that they are NOT alone and that, by sharing their experience with their disease (their own “myMPN”), the research and pharmaceutical community will be better equipped to make decisions that will help them thereby changing their prognosis!
The MPN Research Foundation’s role in this is both as guide and gatekeeper. We work with the developers of the registry to make sure that everything that patients enter into the database is protected and is only shared to those who have valid scientific or drug development related reasons for wanting it AND only with the proper consent of the patients. We work with the researchers and industry representatives to understand what information is needed to guide business and research decisions that ultimately result in better treatment and care. Finally, we talk to patients about their experience with the disease, compare those experiences with others and show them that they are NOT alone.
There are many questions we hope to be able to answer reliably once we have consistent participation in the registry. For example, are patients with the Jak2 mutation are more likely to experience some of the symptoms in the list above? Is there some commonality to the timing of those symptoms from one Jak2 (or non-Jak2) patient to the next?
We would also like to understand if some of the medicines that patients take work better than others according to patient reporting? The timing of the medicine is helpful to understand here. Did patients who began taking a certain medication early in their diagnosis experience fewer or different side effects? Did their platelet counts return to normal after taking the medication or did the medicine just stabilize the elevation?
Finally, we would like to understand how patient experiences change over longer periods of time (often referred to as “longitudinal studies”). For example, what is the typical frequency and duration of episodes of extreme fatigue for patients over the course of several years? Can we link those symptoms with any outside factors such as diet, exercise, environment, etc?
The answers to these questions are helpful if collected from one or two ET patients, for example. This is often the information that a hematologist in a local medical center may have access to. Imagine if that same doctor had access to data collected from a much larger number of patients? With the data that is provided through myMPN, we have more compelling statistics from which conclusions can be drawn about the validity of treatments, what patients can expect, and how pharmaceutical companies should plan their research and development dollars.
MAKING myMPN A SUCCESS
The key to the success of the MPNRF registry is the participation of the patients. There is power in numbers. The more patients who share their experience, the better equipped the MPNRF is to make a case to the pharmaceutical industry and research community for therapies and research needed to change your prognosis.
If you have questions or concerns, please do not be shy! Contact Lindsey Whyte at myMpn@MPNResearchfoundation.org. We want to have an open dialogue with patients, your families, doctors and other individuals because the more people who understand what we’re aiming to achieve and why it is so important, the better our chance at success!
Our registry is in the beta testing process now but we will be launching it to the MPN community for full participation by the end of this year. Look out for an announcement of the full launch on our website, Facebook page and other outlets, register yourself or your loved one and SPREAD THE WORD!!