Fox Trial Finder and You: Use It to Recruit for Your Trials or to Get Involved Yourself!

Posted under Blog, clinical trial, Companies, Diagnostics, drug development, Funding, Health, Health Care, healthcare, Medical Devices, Medical Supply, Parkinson's, Pharmaceuticals, Startups, Universities, Videos by biotechnow@bio.org (Biotechnology Industry Organization)

From The Michael J. Fox Foundation for Parkinson’s Research

The Michael J. Fox Foundation has launched Fox Trial Finder, a new Web tool that uses state-of-the art technology to connect potential study volunteers with the coordinators of clinical studies that need someone with their specific medical history. The goal is to benefit both study sponsors and patients by getting people into clinical trials and studies faster — speeding the development of new treatments and ultimately a cure for Parkinson’s disease.

“This is an example of how technology can enable us to bring new strategies to address a long-standing problem,” says Deborah W. Brooks, co-founder and executive vice chairman of The Michael J. Fox Foundation for Parkinson’s Research.

Use It to Recruit for Your Trials

Fox Trial Finder enables faster and more efficient connections between willing volunteers and trial teams. Registered volunteers and coordinators, research assistants and investigators can review potential matches and connect directly – online and anonymously – to explore next steps. Fox Trial Finder is open to all recruiting PD trials and observational studies with regulatory approval. The site currently operates in the United States, UK, Canada and Australia. Expansion to additional international locations is expected later this year.

-Volunteer matches are customized for your trial: Fox Trial Finder compares key clinical trial eligibility criteria (such as current and past medication use, location, and Hoehn and Yahr stage) to information provided by patient and control volunteers to suggest possible matches.

-Two-way messaging with de-identified volunteers: Volunteers, who appear as an anonymous profile, can message directly with trial teams recruiting for the nearest site of a trial matches. Trial teams can also initiate communication with volunteers on the site.

-Advanced search enables tailored results based on a trial protocol: In addition to trial matches suggested based on a standard match algorithm, trial teams can search the FTF volunteer database based on specific criteria.

-Ongoing email alerts: An alert system notifies users via email of new matches and messages received on Fox Trial Finder.

Contact Tara Guastella at tguastella@michaeljfox.org to start recruiting for your trial with Fox Trial Finder.

Use It to Get Involved Yourself!

MJFF’s Brooks has not only been instrumental in conceiving, structuring and fundraising for the launch of Fox Trial Finder; she also is putting her money where her mouth is by volunteering for a clinical study herself. She is a control participant in the Parkinson’s Progression Markers Initiative (PPMI), the MJFF-sponsored observational study seeking biomarkers of Parkinson’s disease progression.

This is the first time Brooks has volunteered for clinical research, and she is blogging about her experience. In her first video entry, posted on the eve of her PPMI screening visit, she reflects on her expectations for the coming day, and the journey ahead:

“As an observer and someone who professionally is sitting around the table and thinking about how to get to these answers and do what we can to make clinical research more available and relevant for patients, it’s just not enough for me to sit back and think about what other people can do. I decided I actually should do it myself; I wanted to learn firsthand what participation in a clinical trial would be all about.”

While Debi’s story is unusual, it’s not unique. Others in the MJFF family have similarly been inspired to get involved in the search for a cure. Chris Coffey, PhD, heads the PPMI Statistics Core at the University of Iowa. In fall 2011, he decided to run a marathon to raise funds for Team Fox, MJFF’s grassroots community network raising funds and awareness for the Foundation’s research programs. He writes:

“Like a lot of researchers, I’ve been inspired by The Michael J. Fox Foundation. I knew early on that I wanted to go beyond my scientific relationship with MJFF — I decided to run a marathon, something I’d never done before, to raise funds as part of Team Fox.   Reading through the inspirational stories from other Team Fox members, I get the sense that I’m not the typical participant. Many have a personal connection to the disease.  Although I know people who have had PD, I don’t have an immediate family member with the disease, nor have I ever been a caregiver for someone with PD.

“I ran the marathon to honor the individuals who are volunteering as control participants in PPMI.  It takes a special kind of courage to dedicate oneself to the commitment required of this study when one doesn’t have the disease oneself.”

However you choose to get involved, you’ll be helping speed a cure for Parkinson’s disease. Visit www.michaeljfox.org or www.foxtrialfinder.org to learn more and take action today.

International Rare Disease Day: Join the Movement

Posted under Blog, Companies, Diagnostics, drug development, Funding, Global Health, Health, Health Care, Medical Devices, Medical Supply, Pharmaceuticals, rare disease project, rare diseases, Startups, Universities, Videos by biotechnow@bio.org (Biotechnology Industry Organization)

By Nicole Boice, President and Founder, RARE Project

Being diagnosed with any illness can be overwhelming. Imagine what it’s like, though, to be diagnosed with a disease that you’ve never heard of – maybe even one that your doctor has never seen before. Millions of people start this diagnostic odyssey on their own, with little or no support, no real direction, with feelings of isolation and fear. That’s exactly the situation in which millions of people who are diagnosed with or have a loved one diagnosed with a rare disease find themselves.

The irony however is that, “rare diseases” aren’t so rare. In fact, one in every ten Americans has a rare disease, classified by a patient population of less than 200,000. All told, there are more than 7,000 rare diseases, but sadly, only about 15% have a patient support or advocacy organization and none of these diseases has a known cure.  With little to know support for the majority of these rare diseases it is no surprise that less than 5 percent have an associated therapy or treatment.  This needs to change. . . Now!

While a few rare diseases receive a fair amount of attention, thousands of others do not. One of our primary goals at RARE Project is to help bring rare diseases to the forefront of public consciousness. On February 29, we once again will proudly join forces with many other individuals and organizations in the U. S. and globally to celebrate International Rare Disease Day.

Established five years ago by EURODIS – Europe’s leading advocacy group for rare disease patients – World Rare Disease Day enables those impacted by rare diseases to become a united force that embodies the meaning of “strength in numbers.” With approximately 350 million people world-wide affected by rare disease, this community is deserving of this level of support and attention globally. Rare disease affects more people than those with AIDS and Breast Cancer combined, and think about the level of support, funding and attention that these diseases have garnered. It is the decade for rare disease, and we are working with the larger global community to ensure that this  RARE community of millions be heard. In 2009, the National Organization for Rare Disorders (NORD) partnered with EURORDIS to bring this important initiative to the U.S. with the goal of creating a unified day that supports individual patients while helping organize the rare disease community around common interests; a call for more research and investment in developing treatments, and someday, cures, for these diseases. RARE Project continues to help develop programs that engage people to support World Rare Disease Day. However, RARE Project also realizes that the community needs more support than one day a year, which is why the Global Genes campaign for Rare Disease is an ongoing initiative that organizations and individuals can partake in all year long.

The reality for the rare disease community is that advancements are being driven by concentrated pockets of patients, parents, and others who are working at the grassroots level to highlight the unique needs of those facing rare diseases, and to encourage the healthcare industry and government to focus more resources on these diseases. Organizations like RARE Project and initiatives like World Rare Disease Day provide a visible national and global platform to help rare disease patient communities amplify their messages and reach a much wider audience.

Join The Movement, Spread The Word: It’s as easy as wearing a pair of jeans! Yep, it can really be that simple.  RARE Project has developed a ‘Wear That You Care’ campaign (as part of the Global Genes awareness initiative) that creates an easy way to encourage support for this community of millions in need. Join us here to learn more.

We’re also encouraging people to help us bring together a community of 1 million people supporting these families globally.  “1 million for RARE”, is a Facebook campaign that is being used as a tool to help connect the world around this common cause. If you know anyone who is affected, or simply want to help we need you now! Join us at www.facebook.com/globalgenesproject

You can help!  It’s this easy:

1. Wear Jeans on Feb 29
2. Distribute/wear Blue Denim Ribbons of Hope
3. Join the Facebook Campaign
4. Spread the word

So mark your calendars for February 29 – a rare day in itself – and get involved to help make a difference in the lives of millions of people in the U.S. and around the world impacted by rare disease.

“Alz” Well That Ends Well: The Beta-Amyloid Debate in Alzheimer’s Research

Posted under Alzheimer's, BIO CEO, Blog, Companies, Diagnostics, drug development, Events, Funding, Medical Devices, Medical Supply, Pharmaceuticals, research, Research and Development, Startups, Universities, Videos by biotechnow@bio.org (Biotechnology Industry Organization)

Researchers and clinicians alike believe there is substantial evidence to support the hypothesis that Alzheimer’s disease (AD) may be caused by deposition of amyloid beta-peptide (Abeta) in plaques in brain tissue. But drugs targeted towards the beta-amyloid have met with significant setbacks challenging whether the target is, in fact, real.

With several late stage drugs targeting beta-amyloid poised for market entry, a panel of opinion leaders in the treatment of Alzheimer’s and scientific industry specialists discussed the issue at the 2012 BIO CEO & Investor Conference.

Joshua Schimmer, managing director of biotechnology for Leerink Swann, moderated a panel that included:

• Ted T. Ashburn, MD, PhD, Project Head, Leukine® (sargramostim) and Elitek®/Fasturtec® (rasburicase), Sanofi Oncology
• Michael Gold, MS, MD, Vice President, Clinical Development & Chief Medical Officer, Allon Therapeutics Inc.
• Marc L. Gordon MD, Chief of Neurology, Associate Professor of Neurology and Psychiatry, Zucker Hillside Hospital, Hofstra North Shore-LIJ School of Medicine
• Hyoung-Gon Lee, PhD, Assistant Professor, Pathology and Neurology, Case Western Reserve University School of Medicine

With all the questions surrounding the beta-amyloid process, Schimmer asked the panelists: “Why don’t we spend billions of dollars to figure out what ABP is doing?”

“It very well could be that this is the wrong target to be going after,” Ashburn replied. “I think with these [recent] failures there are really three things to think about. Is it target problem? Is it a compound problem? Or, is it a methodological problem?”

However, the panelists did agree that it’s very likely that amyloid has something to do with Alzheimer’s disease – it’s just a question of degree.

“Hopefully, in the not too distant future, we have drugs that can do something,” Ashburn said. “The doctor will hopefully have a repertoire of mechanisms to bring to bear as he or she does today with hypertension.”

Takeda opens new drug development center in China

Posted under Blog, China, Companies, Diagnostics, drug development, Funding, Medical Devices, Medical Supply, Pharmaceuticals, Startups, Takeda, Universities, Videos by John Carroll

Japan's Takeda is adding a new drug development center in Shanghai intended to complement the international clinical work now under way in Singapore and Cambridge, MA. Both of the existing operations, including the cancer drug developer Millennium in Cambridge, work with contract research organizations to advance new treatments through the clinic. Now the Shanghai operation will draw on the international team to study new drugs catering to the fast-growing market in China. Story