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China has initially established two national rare disease databases

 Last Update: 2023-01-01
 Source: Internet
 Author: User

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At present, rare diseases are attracting more and more attention
from all parties.
Mao Qunan, director of the Department of Planning, Development and Information Technology of the National Health Commission, pointed out on the 28th that at present, there is still a lack of effective methods and products
for the diagnosis and treatment of rare diseases.
For a long time, the National Health Commission has used many policy tools to support early screening, detection and effective intervention
of rare diseases.

Professor Zhang Shuyang, president of Peking Union Medical College Hospital, told reporters on the same day that at present, two national databases have been initially established, namely: China rare disease registration system and national rare disease direct reporting system, collecting more than 600,000 patient data
.
The two systems complement each other in their respective roles
.

It is reported that as the leader of the China Rare Disease Diagnosis and Treatment Collaboration Network, Peking Union Medical College Hospital has built a rare disease research collaboration system
from multiple dimensions.
Zhang Shuyang introduced that the China Rare Disease Registration System (NRDRS) is an online registration platform for rare diseases established by Peking Union Medical College Hospital and 20 hospitals with advantages in rare disease diagnosis and treatment across the country, including clinical information database and biobank
.
"To date, more than 100 hospitals have used the platform for cohort studies
.
" Professor Zhang Shuyang pointed out, "We have established technical standards
for collection, entry, preservation and other links.
"The information that needs to be collected covers genetic diagnosis of rare disease patients, biological sample information, etc
.
By August 2022, the system had registered more than 170 rare disease cohorts
.

Another database, the "China Rare Disease Diagnosis and Treatment Direct Reporting System", is supported by the National Health Commission and the Medical Administration to understand the prevalence and burden of rare diseases in China
.
In October 2019, the system went live, and so far a total of 56 entries have been collected, with a cumulative number of 570,000 registered cases and nearly 400 hospitals participating in case registration
.

It is reported that the fourth rare disease cooperation and exchange meeting
held online.
Zhang said that the NRDRS system is a research platform, which comprehensively collects patient information, promotes the discovery and mechanism of pathogenic genes, and also promotes orphan drug clinical trials
.

"The 'China Rare Disease Diagnosis and Treatment Direct Reporting System' is fast and convenient, mainly used to locate patients with rare diseases, understand the main diagnosis and treatment methods of rare diseases, and gather scattered cases into one platform
.
" She explained that there is a synergistic effect between researchers, and breakthroughs
have been made in many aspects of rare diseases in various systems.

The expert revealed that at present, the State Key Laboratory of Rare Diseases has been gradually built, and 11 key technology platforms continue to be in place
.
"A whole-life cycle diagnosis and treatment and whole-process collaborative innovation system is taking shape, which is conducive to early detection and early diagnosis, and realizes the availability of
medicines.
"

Mao Qunan called for increasing the popularization of health science on rare diseases, so that more people can understand the prevention knowledge of rare diseases and reduce the occurrence; At the same time, a variety of measures are taken to increase the proportion of early screening and detection, so that patients can get effective intervention
as early as possible.
The official said: "We hope that the whole society will pay attention to patients with rare diseases and their families, and give support and help
.
" ”

At present, there are less than 90 new drugs for rare diseases, and 58 drugs have been included in the national basic medical insurance catalog, covering 29 rare diseases
.
But there are still 29 drugs for 14 rare diseases that are not included in medical insurance, Zheng Bingwen, a professor at the School of Government Management of the Chinese Academy of Social Sciences, said that some institutional and institutional innovations of local governments have become an important force to guide and establish a rare disease drug guarantee mechanism, such as some institutional innovations
in Boao Lecheng, Hainan.
The scholar bluntly said that rare diseases are difficult to see, treatment is expensive, special medical food is in short supply, and the market access threshold is high
.
He pointed out that we should explore the diversification of systems, entities and financing
.

What mechanisms do governments use to guide and mobilize social resources and become the driver of co-payment mechanisms and principles? Zheng Bingwen hopes to establish the China Rare Disease Seed Fund, which will become a platform and mechanism
to guide and mobilize social resources.

It is reported that on November 25, 2022, the website of the Drug Review Center of the State Food and Drug Administration released the "Guidelines for General Considerations for Organizing Patients to Participate in Drug R&D (Trial)"
.
Lu Shuang, deputy director of the clinical department of biological products of the Center for Drug Evaluation of the State Food and Drug Administration, said that in drug research and development, the role of patients should be paid attention to, and patients should participate in the whole life cycle
of drug research and development.

During the interview, the reporter learned that in order to explore the power of public welfare and charity to better participate in the multi-level protection of rare diseases, the Beijing Pain Challenge Foundation, the Department of Pharmaceutical Affairs Management and Clinical Pharmacy of Peking University, and the International Research Center for Pharmaceutical Management of Peking University issued the "Research Report on the Multi-level Protection of Public Welfare and Charity Participating in Rare Diseases"
.
Wang Yiou, founder and vice chairman of the Beijing Pain Challenge Public Welfare Foundation, introduced that this year the foundation launched a rare disease public welfare plan, hoping to link forces from all walks of life to jointly promote the development of
rare disease public welfare undertakings.
(End)

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