2022 SHS Professor Wu Depei: Strive to promote the standardized diagnosis and treatment of PNH, pay attention to rare diseases, and do not let love be rare

From October 8 to 9, 2022, the 15th Suzhou Hematology Summit was held
in Suzhou Dushu Lake World.
Since its inception in 2008, the Suzhou Hematology Summit has shared the cutting-edge academic progress for many hematology colleagues and well-known scholars in the field of hematology across the country, and has now become an important event
in the field of hematology in China.
This conference invited well-known hematology experts at home and abroad to conduct in-depth discussions
on the research and development of new drugs in hematology, the construction of big data platform, the work plan of the working group on rare blood diseases, and the blood innovation forum.

The number of rare disease patients in China has reached 20 million, there is an unmet need for diagnosis and treatment, paroxysmal nocturnal hemoglobinuria (PNH), as one of the rare blood diseases, the incidence rate is about 1-2/1 million, which requires continuous attention
.
The Hematology Summit established the China PNH Diagnosis and Treatment Collaboration Group, which continuously improves the standards and systems of disease management and improves the standardized diagnosis and treatment level
of PNH in China with the cooperation of all countries nationwide.
On this occasion, Yimaitong specially invited Professor Wu Depei from the First Affiliated Hospital of Soochow University to interpret the hot topics of the Suzhou Hematology Summit, the work progress and plans of the Hematology Rare Disease Working Group and the PNH Diagnosis and Treatment Collaboration Group, so as to feed readers!

Yimaitong: The 2022 Suzhou Hematology Summit was grandly opened, can you please introduce the Suzhou Hematology Summit and talk about the wonderful content of this summit?

In 2008, the 20th anniversary of Jiangsu Institute of Hematology held a series of academic activities, the first Suzhou Hematology Summit was one of them, which has a history of
more than ten years.
Nowadays, the Suzhou Hematology Summit has become one of the brand conferences in the field of hematology in China, attracting hematology experts from all over the country to attend
.
With the unremitting efforts of leaders and experts in various disciplines, the Suzhou Hematology Summit insists on holding it regularly, focusing on the frontier, close to the clinic, and focusing on transformation
.

The 2022 Suzhou Hematology Summit was grandly opened, and the content and pre-conference of continuing medical education were organized on October 7, covering the progress of diagnosis and treatment of common diseases in hematology, the standard process and demonstration of basic operations, standardized education forums, and data update and interpretation
of blood diseases and infections.
On October 8, the academic content of Suzhou Hematology Summit officially began, and a number of academicians and well-known experts at home and abroad were invited to the main venue in the morning to conduct in-depth discussions
on cutting-edge, interdisciplinary and translational topics of hematology development.
In the afternoon, there were more than 10 sub-venues, basically covering all subspecialties in the field of hematology, as well as biobig data, multi-center clinical research, blood MOOCs, and national and regional working group meetings.

Yimaitong: In order to standardize the diagnosis and treatment of rare blood diseases, the Rare Disease Group of the Hematology Branch of the Chinese Medical Association has made a lot of efforts, can you talk about the current work results and future plans of the Rare Diseases Group?

According to statistics, the number of rare disease patients in China has reached 20 million, and there are unmet diagnosis and treatment needs, which require continuous attention
.
At the two sessions in 2022, about 25 NPC deputies and CPPCC members concerned about rare diseases submitted proposals to discuss issues
related to rare diseases.
Premier Li Keqiang clearly pointed out in the government work report that "strengthen the protection of rare disease drugs"
.

In the future, it will standardize the prevention and diagnosis and treatment of rare blood diseases, strengthen and improve the level of diagnosis and treatment of rare blood diseases, promote the research and development and approval of drugs for rare blood diseases, and also release consensus on rare diseases to standardize the diagnosis and treatment
of rare diseases.

Yimaitong: As one of the rare diseases of blood, the incidence of PNH is about 1
in 100,000.
With the continuous launch of new drugs in China, the diagnosis, treatment and management of such patients will also usher in great changes
.
Can you please tell us what plans the domestic hematology community will have in the field of PNH disease in the future?

PNH is a rare and fatal hematological disease, patients will have fatigue, anemia, bone marrow failure, hemoglobinuria, thrombosis and other symptoms, clinical needs need to be met urgently, this problem has also attracted the attention
of domestic hematology clinical and scientific researchers.
In this context, the Hematology Branch of the Chinese Medical Association discussed and planned to promote the establishment of the China PNH Diagnosis and Treatment Cooperation Group, and with the cooperation of all countries nationwide, constantly improve the standards and systems of disease management, jointly improve the standardized diagnosis and treatment level of PNH in China, and improve the prognosis
of patients.

The proposed PNH diagnosis and treatment collaboration group focuses on four core goals to achieve standardized diagnosis and treatment, establish a collaborative mechanism, improve patient management and education, and strengthen clinical research
。 The core is to formulate PNH diagnosis and treatment guidelines and consensus, carry out PNH diagnosis and treatment training, improve the diagnosis and treatment level of cooperative hospitals, improve the working mechanism, and produce academic publications; Core two, national collaboration, up-down linkage, establish a two-way referral mechanism, difficult case discussion, remote consultation, and guide members to follow up and treat; The core three is to establish a patient registration system, carry out patient education, popular science publicity, online consultation, and remote consultation; Core 4: encourage research and development, organize academic conferences, strengthen international exchanges, synchronize cutting-edge progress, help members improve their clinical level, and accelerate talent training
.

In the near future, the PNH diagnosis and treatment collaboration network plans to fully promote PNH diagnosis and treatment training, data platform and multi-center research, patient education and other work content, and looks forward to continuing to promote the development of PNH disciplines in the future, carry out in-depth academic exchanges, comprehensively improve the level of clinical PNH diagnosis and treatment, and benefit more patients
.

Prof.
Depei Wu

• Director of the Department of Hematology, Chief Physician, Professor, Doctoral Supervisor, The First Affiliated Hospital of Soochow University

• Executive Deputy Director of the National Clinical Research Center for Hematological Diseases

• Deputy Director of Jiangsu Hematology Institute

• Director of the Institute of Hematopoietic Stem Cell Transplantation, Soochow University

• Member of the 13th National Committee of the Chinese People's Political Consultative Conference

• Chairman of the Hematology Branch of the Chinese Medical Association

• Vice President of Hematologist Branch of Chinese Medical Doctor Association

• Vice Chairman of the Expert Committee of China Hematopoietic Stem Cell Donor Database

• Editor-in-Chief of Chinese Journal of Hematology