We appreciate that PatientCrossroads and its CONNECT registry don’t get between us and our patient community – they keep patients at the center of their efforts, as they should be, and make it easier for us to advocate on their behalf
Dublin, Ireland (PRWEB) April 16, 2013
[International Rare Diseases Research Consortium Conference] — PatientCrossroads today announced the names of the initial disease organizations selected to participate in a beta test of the new CONNECT Open-Access patient registry. The CONNECT Registry Partners - patient advocacy groups, pharmaceutical companies and medical researchers - represent a range of disease organizations, from ones with fewer than 200 patients to others that have more than 90,000 patients.
PatientCrossroads made its announcement at the first International Rare Diseases Research Consortium (IRDiRC) Conference, being held in Dublin, Ireland, April 16 to 17, 2013.
“The purpose of the beta test is to gather feedback from the participating organizations on details of the CONNECT open-access registry program, such as nuances in the business model, data sharing policies, governance and outreach methods to patient communities,” said Kyle Brown, founder of PatientCrossroads. “Barriers to quantifying the patient community are coming down, and research interest is speeding up. Patient organizations can’t afford to delay in taking steps to organize their patient populations, and CONNECT is an important new way to accomplish this. When the short beta test finishes, we’ll be opening CONNECT access more widely.”
CONNECT is a shared, open-access patient registry able to collect data on any disease, from the most rare to more common diseases. In the CONNECT Registry platform, patients own their data, opting in and consenting to share their de-identified information. PatientCrossroads is responsible for ensuring that physicians and other clinicians, medical researchers, pharmaceutical companies and disease foundations have equal and equitable access to the de-identified patient information.
”We appreciate that PatientCrossroads and its CONNECT registry don’t get between us and our patient community – they keep patients at the center of their efforts, as they should be, and make it easier for us to advocate on their behalf,” said Jill Wood, founder of Johah’s Just Begun an advocacy group representing Sanfillipo syndrome. “CONNECT offers rare-disease advocacy organizations like ours all the benefits of a patient registry without a the expense and complication traditionally associated with registries. We’re looking forward to participating in the beta test to help refine the details of CONNECT.”
CONNECT Registry Partners
The following organizations were selected to participate in the CONNECT program:
- Alagille Syndrome Alliance
- Association Shifa des Maladies NeuroMusculaires (ASMNM) [neuromuscular diseases]
- Chagas Disease Foundation
- ECD Global Alliance [Erdheim-Chester Disease]
- GIST Support International [Gastrointestinal stromal tumor]
- International Essential Tremor Foundation
- Jonah's Just Begun-Foundation to Cure Sanfilippo
- Organic Acidemia Association [organic acidemias]
- PMG Awareness Organization [polymicrogyria disorders]
- The Cushing Support and Research Foundation
- The Romberg's Connection
- Trisomy 18 Foundation
Invitation to Join CONNECT
Looking beyond the beta test, PatientCrossroads will open CONNECT participation to organizations that agree to the program’s marketing and outreach requirements, which include maintaining a link from the organization’s website to the registry website; sending at least three messages per year to the disease community to encourage participation; encouraging researchers and healthcare providers to use the registry data; and promoting use of the shared registry model among other disease organizations
Interested organizations can begin by completing the CONNECT Registry Program Enrollment Form.
PatientCrossroads provides registry systems 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.
For more information, contact:
Kyle Brown, PatientCrossroads
+1 (650) 678-8929
# # #