Significant milestone on the first anniversary of launch of unique database for the rare disease community
Clinigen Group plc (AIM: CLIN, ‘Clinigen’ or the ‘Group’), the global pharmaceutical and services company, and CheckOrphan, the leading news and information source for rare diseases, announce the 128th addition to a unique online access program register for rare diseases1 on Rare Disease Day 2016, the first anniversary of its launch.
The register, which was developed by CheckOrphan in collaboration with Clinigen’s Managed Access division, Idis MA, and launched on Rare Disease Day 2015, is the first resource of its kind for the rare disease community. CheckOrphan has over 500,000 visitors to its site each month from across the world.
Patients with rare diseases are often among the most in need of access to early-stage medicines, which can sometimes be the first and only treatment available for their condition. The register enables physicians to better serve these patients, who require a specific medicine and have no alternative treatment options, by providing a comprehensive, searchable database of ethical and compliant access programs. Since its launch in February 2015, the register has grown dramatically to incorporate 128 active access programs from over 90 companies for rare disease and orphan drugs across a wide range of therapeutic areas and geographies.
Robert Derham, Founder of CheckOrphan said: “We have been very pleased by the positive response to the access program register both from physicians, who are using the database to find solutions for their patients, and from the pharmaceutical companies, who wish to ensure that information about their rare disease access programs is made available compliantly. The addition of 128 programs within our first year is a huge milestone for the access program register and we look forward to building on our strong partnership with Idis MA to continue this success.”
Maxine Hamilton, Managing Director, Idis Managed Access said: “As the global leader in providing access to early-stage medicines, we are very proud of the progress made so far, and of our continuing work with CheckOrphan to help develop and support this pioneering resource. Access to unlicensed medicines is an area of huge importance to the rare disease community and our hope is that the register will continue to expand. We want to ensure that physicians, patients and their families receive appropriate information about ongoing access programs for potentially life-saving treatments for their conditions.”
Access programs are regulated frameworks put in place by pharmaceutical manufacturers to allow physicians to request access to specific medicines where their patient is unable to access that medicine through clinical trials or via the usual commercial route. The register, which is hosted on CheckOrphan’s website, welcomes submissions from manufacturers or specialist providers of access programs who wish to list on the register.
1 http://www.checkorphan.org/access-programs/database
