“The way we have exceeded our initial enrollment goals signals to us that clinicians and patients alike recognize the importance of the PROMPT registry,” said Mark E. Robson, M.D., clinical director of Clinical Genetics Service at Memorial Sloan Kettering
San Mateo, CA (PRWEB) February 10, 2016
PatientCrossroads announces that the Prospective Registry of Multiplex Testing (PROMPT), a research registry built on the secure online PatientCrossroads platform, has exceeded both its one-year and overall recruitment goals since launching in September 2014. More than 1,600 participants have joined the PROMPT study, which seeks to advance understanding of the hereditary risks for certain kinds of cancer. The registry’s year-one enrollment goal was 300 to 500 participants, and its overall recruitment goal was 1,000.
PROMPT is designed for people who have had a newer form of genetic testing, called gene panels, and who were found to have a genetic variation that might be linked to an increased risk of developing cancer. Gene panels can test for 20 or more genes – “multiplex” - linked to various types of cancers. Through PROMPT, patients, physicians and researchers can share the results of this newer, more comprehensive genetic testing to better understand the implications of genetic mutations in genes about which we know much less that we do about more established genes, like BRCA1 and BRCA2.
“Gene panels have identified many individuals who have mutations in genes that we didn’t used to test. These mutations seem to be linked to generally lower risks of cancer than the better-known cancer genes like BRCA1 and BRCA2, but our understanding is incomplete” said Susan M. Domchek, M.D., director of the MacDonald Women’s Cancer Risk Evaluation Center and Basser Professor in oncology at the Abraham Cancer Center at the University of Pennsylvania, one of the founding institutions of PROMPT. “Because of this, it can sometime be difficult to translate the gene panel results into clear-cut clinical recommendations. The hope is that more and better research through PROMPT will help us translate these test results into the most effective screening and follow-up recommendations for patients as quickly as possible.”
“The way we have exceeded our initial enrollment goals signals to us that clinicians and patients alike recognize the importance of the PROMPT registry,” said Mark E. Robson, M.D., clinical director of Clinical Genetics Service at Memorial Sloan Kettering Cancer Center. “The more participants that enroll in PROMPT, the faster we will be able to make meaningful discoveries, so we can better advise individuals and families found to have mutations in these genes.”
“It’s encouraging that the PROMPT registry has achieved such successful enrollment numbers in a short period of time,” said Kyle Brown, founder of PatientCrossroads. “Sharing de-identified patient data, in a manner that protects patient privacy, is a very effective way to enable the clinical and research communities to glean new information from gene panel testing.”
The PatientCrossroads platform provides a secure online information portal through which patients can complete questionnaires about their personal and family health histories. This information is de-identified to preserve patient privacy before being shared with physicians and researchers looking for connections between gene mutations and cancer. Patients may optionally participate in subsequent identified studies. Interested patients who have had cancer gene panel testing may learn more about enrolling at http://www.promptstudy.org.
Since 2005, PatientCrossroads has pioneered the use of patient registries to accelerate therapeutic development and empower patients. PatientCrossroads registry programs connect patients with researchers, advocates and industry organizations working to understand or treat specific diseases and conditions. Dedicated to openly accessible registry programs, PatientCrossroads has been recognized for its efficacy through national and international awards and partnerships. Its groundbreaking CONNECT patient registry platform allows de-identified patient information from multiple disease to be shared and used to research diseases, find new treatments, and better educate and support patients and their families. For more information, visit http://www.patientcrossroads.com.
About the Prospective Registry of Multiplex Testing (PROMPT)
The PROMPT registry is a database that will include patients identified with deleterious or suspected deleterious mutations in any of the cancer susceptibility genes targeted in this research study. Individuals will be offered the opportunity to join the registry by participating in a process of informed consent. The study's Principal Investigators are Mark Robson, M.D., of the Clinical Genetics Service at MSKCC; Susan Domchek, M.D., of the Abramson Cancer Center of the University of Pennsylvania; Fergus Couch, Ph.D., of the Division of Experimental Pathology, Mayo Clinic and Kenneth Offit, M.D., MPH, chief of the Clinical Genetics Service at MSKCC.