Response to paper: "Mitochondrial diseases in North America"
SophiaZilber, N/A, N/A
Submitted April 27, 2020
I read with interest a paper "Mitochondrial Diseases in North America - An analysis of the NAMDC Registry" published in your journal.
I would like to draw your attention to my paper which is a data analysis of a patient-populated registry - also for the most part covering North America, which was published in March, 2020: https://companyofscientists.com/index.php/mm/article/view/147
My paper describes in detail issues and limitations identified in patients self-reported data and provides suggestions for improvements of registry and survey design that can be helpful for NAMDC and other registries.
Even more importantly, patients’ comments and thoughts shared in the registry were deeply personal, and it was clear that these patients have a real need in being heard. I felt very honored to have been able to give voice to those comments, which otherwise likely would not have been read or discussed.
I work in a pharmaceutical company and this paper was written as a volunteer project in the memory of my daughter, Miriam. I hope our papers can be seen as complementary to each other.
I would like to thank UMDF for this important collaboration.
I read with interest a paper "Mitochondrial Diseases in North America - An analysis of the NAMDC Registry" published in your journal.
I would like to draw your attention to my paper which is a data analysis of a patient-populated registry - also for the most part covering North America, which was published in March, 2020:
https://companyofscientists.com/index.php/mm/article/view/147
My paper describes in detail issues and limitations identified in patients self-reported data and provides suggestions for improvements of registry and survey design that can be helpful for NAMDC and other registries.
Even more importantly, patients’ comments and thoughts shared in the registry were deeply personal, and it was clear that these patients have a real need in being heard. I felt very honored to have been able to give voice to those comments, which otherwise likely would not have been read or discussed.
I work in a pharmaceutical company and this paper was written as a volunteer project in the memory of my daughter, Miriam. I hope our papers can be seen as complementary to each other.
I would like to thank UMDF for this important collaboration.
Comments on my paper are appreciated and can be sent to sophiazilber@gmail.com.
Sincerely,
Sophia