Diversity: The differences in age, race, gender, ethnicity, education, and background within a group – is a critical but often-neglected aspect of research and scientific inquiry. We frequently hear about its importance in many aspects of our life, such as schools and the workplace. However, diversity is particularly important when studying diseases and chronic conditions.
When researching an illness, we sample a small group of individuals from the overall population to accelerate the discovery and development of better treatment options, potentially informing policy and insurance decisions. The chosen sample group must be as large and as diverse as possible, in order to accurately represent the overall population with the condition. Otherwise, the study results may not apply to everyone, which could delay treatments and medicines.
Examining Genetic and Social Risk Factors
We know from years of research that individuals from some groups can be at a higher risk for certain illnesses due to genetic predispositions. For example, African Americans have been found to have a higher incidence of cardiovascular disease than other groups, leading both clinicians and patients to monitor their blood pressure more closely (Source, Source). Research has also found that a subset of Asian individuals may have a genetic predisposition causing them to have a negative reaction to carbamazepine, an anticonvulsant medication (Source).
Diabetes itself has a significant genetic component and occurs at varying rates across the world for reasons that are still not fully understood. Combined with the fact that type 1 diabetes itself is highly personal and varies significantly from one individual to the next, it highlights the need for diverse study participants.
Nationwide research participation remains far too low for racial/ethnic minorities and other underrepresented groups. There are a number of reasons for this, such as flaws and oversights in study design, limited access to medical facilities and, systemic bias/racism.
At T1D Exchange, we recognize these challenges and the importance of diversity and continuously push to reach individuals from all backgrounds and encourage everyone to join the T1D Exchange Registry. That’s why it’s so critical for us to reach all people living with T1D, from all sections of American life.
By joining our data together, we are able to paint a fuller, more clinically accurate picture of life with T1D and accelerate the discovery of therapies.
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Do you have any questions? Contact us at 617-892-6165 or Registry@T1DExchange.org