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Join the International Registry of Rare Embryonal Tumors of CNS
May 17, 2024, 23:53

Join the International Registry of Rare Embryonal Tumors of CNS

Ruzanna Papyan shared a post by the International Registry of Rare Embryonal Tumors of the CNS on LinkedIn and added:

“The Importance of Registries.

In the dynamic medical research landscape, registries stand as beacons of hope for understanding and tackling rare diseases.”

Quoting International Registry of Rare Embryonal Tumors of the CNS’ post:

“The rapid development of medicine, implementation of new targeted drugs and immunotherapy led to better understanding and treatment of multiple types of cancer. However, in the realm of medical research, rare diseases are still challenging. Clinical trials often are not available due to limited participant pools and logistical hurdles. However, registry studies offer a solution.

By gathering data from individuals with rare diseases, registries provide valuable insights into disease patterns, diagnosis, treatment and outcomes. They facilitate international collaboration, transcending borders to harness collective expertise and resources.

Registry studies track patients over time, offering longitudinal perspectives that enhance our understanding of these conditions. This knowledge enables improve patient outcomes and quality of life.

Join the International Registry of Rare Embryonal Tumors of CNS and help us to gain more knowledge about these rare diseases.”

Source: Ruzanna Papyan/LinkedIn and International Registry of Rare Embryonal Tumors of the CNS/LinkedIn

Ruzanna Papyan is a pediatric oncologist and clinical research physician at the Pediatric Cancer and Blood Disorders Center of Armenia, Hematology  Center after Prof. Yeolyan. She is also Head of the Musculoskeletal Multidisciplinary Working Group and Assistant Professor at the Department of Pediatric Oncology and Hematology at Yerevan State Medical University.