MPN Research Foundation Ups Global Outreach as New Patient Registry Is Set to Launch

The MPN Research Foundation wants to empower patients through initiatives such as their MPN patient registry.  
BY Katie Kosko
PUBLISHED August 19, 2016
With only five employees on the payroll, the MPN Research Foundation is small, but it’s looking to make a global impact.

This year has been one of big changes for the foundation as it fine-tuned its approach to finding new treatment for myeloproliferative neoplasms (MPNs).

“Our mission is to change the prognosis for MPN patients and to help them change their own prognosis by becoming active fighters in battling this disease,” says Barbara Van Husen, president, MPN Research Foundation, in an interview with CURE. MPNs are rare, progressive blood cancers. There are three “classic” types: primary myelofibrosis (MF), essential thrombocythemia (ET) and polycythemia vera (PV).

Patient inquiries help the MPN Research Foundation determine what needs are not being met in the community. These inquires do not only come from those fighting MPNs in the United States, but also from several other countries. It’s this aspect that got the foundation interested in expanding its global initiative. It is now a charter member of the MPN Advocates Network, a worldwide network of MPN associations.

“We are very excited about this because it gives us an opportunity to work together with these organizations,” Van Husen says. “I think is going to be really, really important.”

A combination of science and research is the focus of the MPN Research Foundation. Van Husen adds that finding the “hotspot” as the needs for research change is crucial.

“If there is sufficient action in a specific area of research, then our efforts aren’t required there,” Van Husen says. “We want to open up new avenues of research. We want to make sure that no stone is left unturned.”

Several new research projects are in the works in an effort to make progress in MPNs. Van Husen is especially excited for two: the study of interferon therapy and creating an MPN patient registry.

Interferon has been used for decades to treat several diseases and cancer. The drug, given by injection, has even shown promise for some MPN patients. Based on these findings, the foundation wants to see exactly how interferon works and which MPN patients benefit most.

The MPN patient registry is a project that Van Husen reveals has been thought about for years. A beta test is set to start in September using a platform created by Genetic Alliance.

“We hope to use that registry as a basis for what we’re calling a progression market project,” she says. “MPNS are progressive; you start with ET and you get MF, but what measures that progression is not well understood or universally agreed upon. So we’re going to use our registry as the basis for it.”

She adds that similar work has been successfully done by the actor Michael J. Fox for Parkinson’s disease and the Multiple Myeloma Research Foundation (MMRF) for multiple myeloma.

“It won’t pay off for a long time,” says Van Husen. “But we think until the progression of these diseases is better understood our patients will still have concerns such as ‘I know what I have now, but what could I get later? And how can I avoid that progression?’”

The MPN Research Foundation is also working tirelessly to get more patients entered into clinical trials. It sends out monthly emails, newsletters twice a year and reports new findings at the conferences of two major organizations – the American Society of Clinical Oncology (ASCO) and the American Society of Hematology (ASH).

If patients live too far from major cities, Van Husen says, they may not know about clinical trials. The MPN Research Foundation pushes as much information out to oncologists as it can, but it’s not guaranteed they will know about them all.

“There are new trials opening up every year and we hope some of these will be really effective,” says Van Husen. “We have one approved drug for our diseases. It’s a JAK Inhibitor and it’s a really wonderful drug, but it doesn’t work for everybody and it doesn’t work forever. There is really no other alternative once it stops working. That is why we are looking to broaden the range of possibilities for these patients. By looking outside the most active research areas, we sometimes find opportunities that can either complement the existing treatment or in some cases act as a newer [or] better alternative.”
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