2) When you enroll in the registry, please ensure you complete both surveys. Without this, we cannot utilize or learn from your data.

3) Please remember to enter genetic mutation whenever available and, if possible, upload the corresponding genetic report.

4) You can enroll or update your registry information HERE.  If you are having trouble logging in, please reach out to cords@sanfordhealth.org.

Delivering Regulatory Impact from Consortium-Based Projects
A joint paper from the Innovative Health Initiative (IHI) and Critical Path Institute (C-Path), sharing lessons from two decades of public–private partnerships on how consortia can maximize regulatory success. Read the paper.

Mitochondria — The CEO of the Cell
In the Journal of Cell Science, researchers describe how mitochondria act as dynamic hubs managing metabolism, signaling, immunity, and more — far beyond their role as the cell’s powerplants. Read the paper. 

The Ultimate Power Play in Research — Partnering with Patients, Partnering with Power
Published in Research Involvement and Engagement, this paper explores how power dynamics shape patient and public involvement (PPI) in research. The authors highlight challenges such as tokenism, inequity, and hidden layers of power, and offer recommendations for building more equitable partnerships on research teams. Read the paper.

Disruption of Adaptive Immunity Does Not Attenuate Disease in the Ndufs4(-/-) Model of Leigh Syndrome
Published in PLOS ONE, this study shows that adaptive immune cells (T cells, B cells, NK cells) do not significantly contribute to disease progression in the Ndufs4(-/-) mouse model of Leigh syndrome, underscoring the key role of the innate immune system, particularly macrophages, in driving CNS pathology. Read the paper.