Tuesday, February 24, 2015

Research Fuels Progress Against Cancer


Research Fuels Progress Against Cancer

 

Research continues to be our best defense against cancer. It improves survival and quality of life for millions of people by spurring the development of new and better ways to prevent, detect, diagnose, treat, and, increasingly, cure some of the more than 200 diseases we call cancer.

 

This progress against cancer is the result of the dedicated efforts of many people working together as part of the biomedical research community. These stakeholders include patients, survivors, family members and friends. Also included in this community are the clinicians and academic researchers. The biotechnology, pharmaceutical and diagnostic companies play an important role in the development of ways to diagnose, treat, detect, prevent and cure cancers. Policymakers and citizen advocates, advocacy and philanthropic organizations have an important role to play. Without continued investments in biomedical research through funding agencies like NIH and NCI, progress against cancer is in jeopardy.

 

Although the Foundation does not fund clinical trials directly, we have helped put a spotlight on the need for an increased focus on ET, PV and MF research. Our efforts have seen results. While fewer than 20 clinical trials for MPN treatments were conducted from 1995-2005, there have been over 750 trials since 2005.

 

Clinical trials give patients a chance to try new medical treatments not yet available in the marketplace. During the course of a trial, data is collected recording all observations related to lab results, the patient’s progress (or lack of progress), effectiveness, and side effects of the treatment. Clinical trials are conducted at many sites but usually they are conducted at specialty clinics or teaching medical centers.

 

There are 4 types or phases.

 

Clinical trial phases

Phase I

Phase I studies are designed to determine the best dose of a therapy and how humans process it, as well as to identity any potential toxicities. These first-in-human studies can also demonstrate early effectiveness or clinical results.

 

Phase II

Phase II studies determine continued effectiveness of a therapy in a particular disease or a larger group of patients, in addition to continually monitoring for adverse events or potential toxicities.

 

Phase III

Phase III studies are large trials designed to determine curative value as compared to standard of care (placebos are rarely used in cancer clinical studies).

 

Phase IV

Phase IV studies are also known as post-marketing studies. They provide additional effectiveness or “real-world” data on the therapy and are conducted after approval by the FDA.

 

There are many factors to consider when thinking about joining a clinical trial. There are no guarantees that the treatment being tested will be successful. Travel to a clinical trial site may be difficult and costly. The trial may involve more frequent diagnostic tests, such as a bone marrow biopsies. Participants may be asked to stop taking certain medications that would interfere with trial results. 

 

Whether a trial is right for you is a personal decision that should be discussed with care-givers and family members. The final decision to enroll in a trial should be considered carefully.

Tuesday, February 10, 2015

The Strength of the MPN Community


The strength of a community is determined by how well it is able to take care of itself.

 

How strong is the MPN community?

 

When you do a little research, you immediately see how vibrant this community is. There are so many MPN chat groups, advocacy organizations, Facebook pages, Twitter accounts, and forums we cannot count or list them here. People can get encouragement, information, friendship. People can also get support from organizations not just focused on MPNs. Patient Power has included MPNs in their focus. The National Organization of Rare Disorders (NORD) also provides support for MPN patients. The Leukemia and Lymphoma Society is one of our important partners.

 

It is the spirit and generosity of MPN patients, family and friends that enables the MPN Research Foundation to fund research that promotes medical innovations that have potentially high rewards. The MPN community is small in population, but immense in spirit and generosity.

 

When you read this Blog will get a snapshot of the MPN community. You may have heard that the MPN Research Foundation has helped fund every major advancement in MPN science. In the coming months this blog will provide readers with information about how our current research focus is pushing MPN Science. MPN Research Foundation leadership will be providing their perspective on the where MPN science is going and why. You will receive firsthand accounts from patients and families who are “Leading by Example” by hosting events that help raise funds and MPN awareness. We are inviting MPN patients to “Share Your Journey”. 

 

We also need to hear from you. We want to address the things what will be helpful for you. The only time a comment is not helpful is when there is no comment.

 

Want to learn more now?

 

Our website has an article from the New England Journal of Medicine report on randomized trial of Ruxolitinib vs phlebotomy in Hydroxyurea-resistant PV - See more at: http://www.mpnresearchfoundation.org/NEJM-evaluates-ruxolitinib-for-hydroxyurea-resistant-polycythemia-vera-vs-phlebotomy#sthash.RpkqaN5l.dpuf

 

Did you know February 4th was designated as World Cancer Day by the United Nations. If you visited our Facebook page you would have.

 

Thanks for reading.

 

Enjoy our community.