10 Fox Focus | Research
Every Voice Counts : The Road to Equity in Research
By Kate Stephani
For some time now , there has been increasing evidence of the differences that exist in the incidence , prevalence , diagnosis and treatment of Parkinson ’ s disease across racial and ethnic minority groups . A new study published by Penn Medicine and The Michael J . Fox Foundation highlights the growing body of research suggesting these differences exist , aims to increase our knowledge of disparities in PD and seeks to identify knowledge gaps and policy changes necessary to ensure equal , high-value care for all people with the disease .
One finding tells of the lack of underrepresented racial and ethnic groups in PD research : Of the clinical trials published between 1985 and 2007 , only 17 percent reported participation by race / ethnicity . Of the studies that did report this demographic variable , less than 8 percent of participants were non-white . According to the paper , the lack of racial and ethnic diversity in clinical research adversely impacts our understanding of PD outcomes and limits our ability to provide quality , evidence-based care , further exacerbating health disparities .
Allen Dance enrolled in MJFF ’ s PPMI clinical study after being diagnosed with REM sleep behavior disorder — a way to help researchers understand who is at risk for PD .
For Allen Dance , 60 , of Richmond , Virginia , his participation in research as an African- American man is one way to help researchers understand who is at risk for PD and how to prevent it . “ If everyone in a study is white , then you only know the outcomes for a white population . But are those same outcomes true for people of color ? You don ’ t know unless you have a large , diverse sample size ,” says Allen .
Last year , after being diagnosed with REM sleep behavior disorder ( RBD ), potentially an early symptom of Parkinson ’ s , Allen enrolled