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Inside the quest to start a national registry for sickle cell disease


 
TORONTO
Advocates for Canadians suffering from sickle cell disease a serious condition that can cause crippling pain and frequent hospitalization are on an uphill battle to create a national registry, something they say could revolutionize the research and care for this oft-neglected disease.
“We would like to have Canadian-based data that we can use in Canada,” Biba Tinga, president of the Sickle Cell Disease Association of Canada (SCDAC), told CTVNews.ca in a phone interview.
“We need the national registry also to show what better care can look like, to have access to more treatment options.”
Sickle cell disease refers to a group of blood disorders that are genetically inherited, caused by a person’s blood cells breaking down, or “sickling” into a distorted, crescent shape. These sickled blood cells can cause episodes, or crises, of incredible pain, as well as deprive organs of oxygen, causing organ damage. While some patients may ....

Smita Pakhale , Sickle Cell Disease Association Of Canada , Sickle Cell Disease Association , Ottawa Hospital , Black Lives , அரிவாள் செல் நோய் சங்கம் ஆஃப் கனடா , அரிவாள் செல் நோய் சங்கம் , ஆடவா மருத்துவமனை , கருப்பு உயிர்கள் ,