Disease or Translational Resources

In this section you will have the opportunity to explore information regarding:
Patient registries,
Natural history,
Patients’ information as organizations, toolkits for patients, new-born screening programs, undiagnosed diseases programs (UDPs), EU planned cross-border treatment
Target Patient Value Profile
Databases/Tools (ODDG)
Networks
Biobanks
Biomarkers (Development, guidelines, validation, qualification, genomic, cancer, pain therapeutics)

  1. Showing 49 results for:
  2. Research and Drug Development
  3. Disease or Translational Resources
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The International Agency for Research on Cancer (IARC) Biobank

Published by IARC

BiobankIARC

IARC has developed its own Standard Operating Procedures (SOPs) for the collection, storage and shipment of biological samples. In addition, IARC provides the links of interesting biobank websites and resources.

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EATRIS Matchmaking for lab services

Published by n/a

EATRISIndustry collaborationcore facilitytechnology platforms

EATRIS facilitates academic collaborations with industry. It identifIes scientific & medical expertise and find the capacity to provide access to the latest technologies and core facilities from within our technology platforms.It serves as a single point of contact, provides (legal) support and acts as a negotiator to facilitate project initiation and monitor project execution when needed. Its infrastructure consists of 115+ biomedical research institutes in 14 EU countries.

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European Patients’ Academy (EUPATI) toolbox

Published by IRDiRC

Research and Drug DevelopmentOrphan DrugPatient InformationToolkit for PatientEUPATIToolboxPatient Training

The EUPATI Academy is the only in-depth training program for patient experts so far in EU that lasts 14months.
It includes an on online training program supported with two weeks of F2F training. The Academy is still operated by EPF, providing high quality training in drug development to patient from EMEA.

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Initiatives for undiagnosed diseases

Published by IRDiRC

Research and Drug DevelopmentPatient InformationUndiagnosed Disease ProgrammeGenetic ConditionGenotype and Phenotype Matchmaking

The purposes of Undiagnosed Diseases Programs (UDPs) are to provide patients with an unknown genetic condition a diagnosis and to find the correlation between genotype and phenotype; to share globally the information to facilitate the diagnosis through a matchmaking for finding possible second cases

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New-born screening programs

Published by IRDiRC

Research and Drug DevelopmentRare DiseasePatient InformationGenetic ConditionNewborn Sreening Programme

The purpose of NBS is to detect potentially fatal or disabling conditions in newborns as early as possible and possibly before onset of symptoms. Such detection allows the early treatment which may significantly modify the natural history of the disease and potentially prevent developmental delays, physical disabilities and eventually death.

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