We expect CONNECT to put the Kidney Cancer Association and its 70,000 members on the cutting edge of participatory medicine.
- Bill Bro, survivor and CEO, Kidney Cancer Association
San Mateo, CA (PRWEB) May 23, 2013
PatientCrossroads today announced that the CONNECT open-access patient registry is now available for patient communities and disease organizations – including patient advocacy groups, pharmaceutical companies and medical researchers – to join. Founding Registry Partner organizations, which collectively represent 70 diseases, have expressed their strong support for the program after participating in the beta test period.
“The founding members of CONNECT represent a new breed of advocacy group committed to collecting and sharing patient data openly, for the benefit of the entire disease community,” said Kyle Brown, founder of PatientCrossroads. CONNECT is changing the way patient-provided medical history is collected and shared, by providing a common registry platform to make data available in an open and transparent manner. CONNECT allows advocacy and patient organizations to maintain their branding and act as the outreach and communication vehicle to the community. This approach not only raises the general awareness of specific diseases, it also makes pan-disease patient data broadly available to researchers and pharmaceutical companies to speed their progress toward greater understanding of diseases and improved therapeutic options.
Researchers can leverage the de-identified patient data in the CONNECT registry to provide a baseline for disease progression when demonstrating the efficacy of drug treatments and to recruit screened participant cohorts for clinical trials and studies. The CONNECT patient registry data can also be used to quantify patient and physician projections for clinical trial planning. Additionally, the data will be made available to government, non-profit and academic research users in the hope of reducing the number of proprietary silos of patient data.
“With the launch of the full CONNECT program, we invite disease organizations of any size and prevalence to participate in the freely available CONNECT registry.” Kyle added, “Pharmaceutical and biotech firms interested in sponsorship for the CONNECT program are sought to expand this breakthrough program, made possible through the generous support of Novartis. These founding partner organizations have the ability to contact over 150,000 families and we look forward to the day we have millions of patients registered on CONNECT spanning thousands of diseases.”
CONNECT Registry Partners Declare Their Support
In their own words, here is what some of the founding Registry Partners say about the CONNECT open-access patient registry.
“We expect CONNECT to put the Kidney Cancer Association and its 70,000 members on the cutting edge of participatory medicine.”
- Bill Bro, survivor and CEO, Kidney Cancer Association
“CONNECT will enable our organisation to have an international database of medical professionals specialising in idiopathic intracranial hypertension (IIH) accessible to patients needing experienced doctors within their own country, region, etc. – which we so desperately needed – while providing extensive data to help facilitate research into this rare disease.”
- Heidi Wilson, The I Have IIH Foundation
“Parry Romberg Syndrome is a very rare disorder causing physical changes to our faces and other parts of our body as well as emotional stress to cope with those losses. We hope that through PatientCrossroads CONNECT, research will finally be done to help us get the answers we need.”
- Marilyn Neal, The Romberg’s Connection
“The Alagille Syndrome Alliance (ALGSA) is thrilled to be a founding Registry Partner of the CONNECT Patient Registry. The only way to unravel the mystery of Alagille Syndrome (ALGS) is through research. Research needs data, and that information comes from those willing to share their time, family history and samples (tissue, blood, DNA, etc.) with investigators. The best home for such valuable data is a patient registry, but until now the ALGSA has not been able to afford this critical investment. The CONNECT Patient Registry opens doors to countless opportunities. It makes it possible for us to fill the ALGS data bank so patterns are discerned, hypotheses are formulated and discoveries are catalyzed. We finally can grow the knowledge base that will build a better life for everyone with ALGS.”
- Cindy L. Hahn, President and CEO, Alagille Syndrome Alliance
“The Organic Acidemia Association has a long history of connecting families of patients dealing with a variety of organic acidemia disorders. OAA is excited to join PatientCrossroads to create the Organic Acidemia Association CONNECT patient registry. We now have a tool that allows families to share medical information to benefit each other, as well as to provide necessary and concise information to researchers and clinicians to design studies and clinical trials.”
- Kathy Stagni, Organic Acidemia Association
“We are thrilled to partner with PatientCrossroads to offer a patient registry for eosinophil-associated diseases. This registry will shed light on the number of people living with a spectrum of rare eosinophil-associated diseases and provide insight into diagnostic delays and current treatment practices. A central database of de-identified data that is shared among multiple researchers is a crucial step in helping investigators to understand these diseases and identify eligible patients to participate in clinical trials and surveys. This, in turn, will increase our understanding of these diseases and will ultimately lead us to better treatments.”
- Dr. Wendy Book, President, American Partnership for Eosinophilic Disorders
“The FOD (Fatty Oxidation Disorders) Family Support Group's main Mission is to connect, network, and share information and experiences with Families across the world. Now with our new FOD CONNECT Registry we will be able to expand on that Mission, as well as provide valuable information to aide our researchers in developing new diagnosis and treatment options for the various FODs. Thank you patientcrossroads.com for providing us this invaluable tool!”
- Deb Lee Gould, MEd, Director, FOD Family Support Group
"Trisomy 18 steals the dreams that parents have for the child they are bringing into the world. Too many infants are lost before they even take a breath or make it into their parents’ arms. Partnering with Patient Crossroads to launch the Trisomy 18 CONNECT Patient Registry will change that in the years to come and allow families to demonstrate, by the sharing of data in an open way with the research community, that their child does matter. Facilitating families coming together with scientists and clinical researchers to unlock the mysteries of Trisomy 18 has long been a dream of the Trisomy 18 Foundation. Patient Crossroads’ commitment to these shared goals makes all this possible much sooner than would have been possible without their support. The future for families learning their child has been diagnosed with Trisomy 18 will begin to be different because of the CONNECT registry resources launched now."
- Victoria Miller, Founder and Executive Director, Trisomy 18 Foundation
Founding Registry Partners Span Wide Range of Diseases
In addition to the organizations mentioned above, founding Registry Partners also include International Essential Tremor Foundation, Jonah’s Just Begun-Foundation to Cure Sanfilippo Inc and Ben’s Dream-Sanfilippo Research Foundation, and other organizations for diseases both rare and common. Visit http://www.patientcrossroads.com for the full list of represented diseases and participating organizations.
PatientCrossroads provides patient registries that connect disease communities with scientists studying those conditions. Offering software, technology, management and data curation services, PatientCrossroads’ registries collect data on more than 250 rare diseases and power the NIH’s Global Rare Diseases (Patient) Registry and Data Repository (GRDR) and the NIH NICHD Down Syndrome registry. PatientCrossroads is a full partner in Europe’s RD-Connect platform ensuring global, open access to patient-provided medical histories. For more information, visit http://www.patientcrossroads.com.