Industry Policy Committee Initiatives to Improve Patient Access
As of September 1, 2024
| Company name | Activities being undertaken in relation to intractable and rare diseases |
|---|---|
| Kyowa Kirin Co. | ■ Improvement of aptitude diagnosis
By building a predictive (diagnostic) model of the disease using RWD (observational study/registry), we are working to generate evidence that can contribute to patients who need treatment reaching it promptly and appropriately. Improving access to appropriate treatment
We are creating RWE (Real World Evidence: evidence obtained from RWD analysis) that can contribute to raising awareness of the need for and value of treatment among various stakeholders (patients/medical providers/payers, etc.) and increase patients' awareness of the burden of disease.
Example: Research is underway to clarify the following
- Complications that are important but lack information due to infrequent occurrence
- Physical/mental/economic burden of disease based on various patient perspectives
- Medium- and long-term effectiveness and safety of disease treatments
- Gaps between treatment challenges and current improvements based on interviews with patients and health care providers |
| Takeda Pharmaceutical Company Limited | Initiatives for Early Diagnosis
Takeda has begun collaborating with various stakeholders in an effort to achieve early diagnosis of rare diseases.
As one specific example, in collaboration with physicians, patient groups, other pharmaceutical companies, other healthcare companies, and IT companies, Takeda supported the establishment and operation of the Genetic Angioedema Diagnosis Consortium (abbreviated as DISCOVERY), which aims to improve the diagnosis rate of hereditary angioedema ("HAE").
The consortium's objective was to build an ecosystem for appropriate early diagnosis and improved diagnosis rates through the different expertise and creativity of diverse stakeholders working in collaboration with each other to help patients suffering from undiagnosed symptoms of HAE,
It is a uniquely conceived patient engagement consortium.
The consortium is engaged in AI analysis of medical data, teleconsultation to support diagnosis by non-specialists, and disease awareness for undiagnosed patients.
h ttps:// discovery0208.or.jp/en/top/
Aiming to Reduce the Burden on Patients Many hemophilia A patients receive regular replacement therapy, and self-injection at home can be expected to provide early treatment at the time of bleeding and prevent or reduce bleeding. On the other hand, it is known that in some cases, the burden of bringing home large quantities of drugs from medical institutions, which require proper temperature control, makes it difficult to continue treatment. Therefore, we have launched a project to contribute to solving this problem by conducting a demonstration experiment together with other stakeholders using a delivery robot that delivers medicines to patients under proper temperature control.
*This project has been adopted as a "Project for Urban Implementation of 5G and Other Advanced Technology Services in Nishi-Shinjuku".
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| Mitsubishi Tanabe Pharma Corporation | In the U.S., we have established the JourneyMate Support Progream to support ALS patients who receive prescriptions for our ALS drugs by providing product and disease status calls, customized treatment management and reimbursement support for each patient, and providing patient support. The company supports patients by providing product and disease status calls, personalized treatment management, and reimbursement support. h ttps:// www.radicava.com/patient/support/journeymate-support-program/ |