Idis Ltd, a global leader in the design and implementation of managed access programmes, and CheckOrphan, the leading news and information source for rare diseases, announce the launch of a new online access programmes register, hosted at www.checkorphan.org/access-programs in honor of Rare Disease Day 2015.
“Idis is thrilled to be launching this important initiative with CheckOrphan, to create a register which is compliant and ethical, and which we hope will be a valuable resource for the rare disease community,” explained Simon Estcourt, president, managed access programmes at Idis. “Our hope is that the register will allow Idis and other access programme providers to better serve physicians who are seeking access to specific medicines for their patients who have no alternative treatment options.”
The register has been developed by CheckOrphan, in collaboration with Idis, to create a resource for the rare disease community who wish to access a specific medicine, but find that it is currently unavailable to them.
Access programmes 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 routes. A specific medicine may be unavailable to a patient because it is not commercially available in their country, or may still be in development.
The decision to treat a patient as part of an access programme is based on the clinical judgment of their physician, and is applicable where there is a genuine unmet medical need and no alternative treatments available. In the context of such programmes, it is a patient’s physician who makes the initial request to the provider who is implementing the programme.
“It has been a pleasure to work on this collaboration with Idis, to create a much-needed source of information for the communities that we support,” explained Robert Derham, Founder at CheckOrphan. “The register is the first of its kind focussed on rare diseases, and some of the information on the register cannot be found anywhere else in the public domain. We are honored to be involved in pioneering this with Idis.”
For physician operating in the rare disease setting and seeking access to a medicine for a patient with no alternative treatment options, please visit the register at: www.checkorphan.org/access_programs
The access programmes register hosted at CheckOrphan is open to any companies who are providing access to physicians and their patients via these routes. For a manufacturer, or specialist provider that wishes to list on the register, please contact: robert.derham@checkorphan.org
Idis has nearly 30 years of experience of partnering with pharmaceutical and biotechnology companies to create regulatory-compliant, ethical access to medicines for healthcare professionals and their patients with unmet medical needs.