Archive for April, 2013

Innovative Patient-Controlled Registry Invites Liver Patients to Engage

April 5th, 2013

See Video:  Patient-Centered Drug Discovery in Liver Cancer

Help Me Spread the Word!  Innovative Patient-Controlled Registry Invites Liver Patients to Engage

Today (April 5, 2013)  I am honored to present at the 3rd Annual CanLiv Research Symposium on Hepatobiliary Cancers, on the topic of “Putting Patients at the Center of Drug Discovery”. CanLiv is a vibrant and vital organization in the liver community, founded by Dr. Melanie B Thomas, Associate Professor, Associate Clinical Director of the Hollings Cancer Center and Grace E. DeWolff Professor of Medical Oncology at the Medical University of South Carolina, to support patients with liver cancer and catalyze new research.

Liver cancer or hepatocellular carcinoma (HCC) is the 5th most common cancer in the world and the 3rd leading cause of cancer death.  Unlike many other cancers in the U.S. liver cancer rates are rising. Yet there is only one FDA-approved medication for liver cancer, sorafenib (nexavar), although for some patients surgical or radiation therapies are appropriate.  Clinicaltrials.gov indicates that there are 741 liver cancer studies currently recruiting patients.  One of the largest limiting factors for finding additional treatment alternatives are the low number of liver cancer patients who are participating in clinical research. Only 3-4% of cancer patients and 1-2% of liver patients participate in clinical trials.

I’d like your help in transforming how patients are involved in clinical research. I want to see participation in clinical research, as agenda-setters, outcome-selectors, study-designers, as well as subjects, become the norm for patients in liver disease ( and all conditions!).  One of the new tools to help do this is Registries for All (Reg4All), www.reg4all.org , a novel patient-controlled online platform for sharing health information with researchers and each other developed by respected non-profit patient advocacy organization Genetic Alliance .  It has already won awards  and started to hit tech publications. http://www.technologyreview.com/news/512456/new-disease-registry-gives-patients-some-privacy/

Most people think that registries are only for bridal or baby shower gifts, but registries, repositories for identified and de-identified health information, have the potential to accelerate the research process.

Reg4All is unique because:

¨  Permission to search, discover, access, use and share any data in the registry is 100% participant-controlled

¨  For all individuals – healthy and all conditions (most registries are siloed and of limited use to someone like me with multiple conditions)

¨  Entering information is fun, instead of tedious due to a gamified survey powered by Traitwise®

¨  Each participant controls his or her information through dynamic granular sharing settings – who, how, when and if data is shared thanks to PrivateAccess™ technology

¨  With the individual’s permission, this data is searchable by researchers in real-time through RecruitSource

Liver cancer, and liver research in general is in need of innovation.  My vision is that it can be transformed from the inside out by patients who are active partners in driving that innovation. Reg4All only realizes its potential if patients embrace it.

¨  Empowering  liver patients by valuing patient-generated health data

¨  Engaging liver patients by providing real-time feedback on comparison to others

¨  Entrusting patients with control over if, when, how, and with whom their health data is shared

¨  Representing the whole person rather than individual conditions and disease states (GI, Liver, Immune, Cancer, Biomarkers)

¨  Enriching and enlarging pool of patients to accelerate recruitment through community participation

¨  Reducing frustration and complexity of finding trials

Please help spread the word, particularly to patient advocates, liver and liver cancer patients.  Mention Reg4All in all of your communication vehicles Friday and moving forward.

Thank you!

Twitter:

Liver pts take control of your health data to speed health breakthroughs, B discovered 4 clinical trials.  www.Reg4All.org #Reg4All #CanLiv

Facebook/Online Communities:

Friday April 5th patients and family members living with liver disease are invited to try Registries for All (Reg4All) to share their health information, discover clinical research opportunities, and speed innovation in drug discovery for liver diseases.

Reg4All is unique in 2 ways:

1. It operates across all health and disease conditions. (So more likely to identify research opportunities from correlations between IBD, CF, liver disease, and liver cancers)

 

2. Each participant controls everything about their information– what they store, what if anything they share, with whom they share, for what purposes that information may be used– everything.

 

Visit www.Reg4All.org

 

Newsletter/Blogs:

Innovative Patient-Controlled Registry Invites Liver Patients to Engage

Speeding up the pace of innovation and new drug development is vital for individuals with liver disease.

Research seeks to discover safer, more effective, or easier to tolerate treatments and therapies – therapies that may improve prolong or save your life or patients like you.

Research can’t happen without patients willing to learn more about clinical studies and choosing to participate in studies that are right for them.

As a liver transplant survivor and the former president of the American Liver Foundation, I am excited to partner with Genetic Alliance, a national non-profit advocacy association, to promote a novel solution that makes finding and being found for a clinical trial easier — Registries for All (Reg4All).

If you or a loved one has liver cancer, cirrhosis, hepatitis, and other forms of liver disease, please explore Reg4All so we can all help each other.

Reg4All features TrialsFinder which provides a new, effective way to match individuals who are willing to participate in research with researchers looking for them.  Our top priority is helping you to find research projects that are useful you, making it easy for researchers to find you, while allowing you to control how, when, and if your information is shared.

Please join us in this by visiting www.Reg4all.org