PostedSeptember 19, 2021 · 2 minute read
This partnership will support multiple Leigh syndrome research projects and fuel development of future treatments.
September 19, 2020 — MitoAction, a nonprofit organization founded to make a measurable impact in the lives of those who are affected by mitochondrial disease, Cure Mito Foundation, a nonprofit organization dedicated to advancing education and research for Leigh syndrome and mitochondrial disease, and AllStripes, the leading research platform dedicated to rare disease, today announced the launch of their new research partnership for Leigh syndrome.
MitoAction, Cure Mito Foundation and AllStripes are teaming up to create a research database that will grow knowledge of Leigh syndrome and power multiple Leigh syndrome research studies.
AllStripes was co-founded by a rare disease patient and currently works in more than 40 rare diseases. The AllStripes team has developed a novel technology platform that generates deep clinical evidence from patient records to accelerate rare disease research and empower patients and families to participate in research from home.
When people affected by a rare disease sign on to contribute their, or their loved one’s, medical history through AllStripes, they can help researchers understand the natural history of a condition, disease progression and disease severity, symptoms and quality of life, along with other important outcomes that drive research.
“We are thrilled to offer people and families affected by Leigh syndrome an easy way to access their medical records and participate in research online. MitoAction and the Cure Mito Foundation are leaders in this community, and we are proud to have them as a partner as we create a research resource that will enable the development of new treatments for Leigh syndrome,” said Nancy Yu, co-founder and chief executive officer of AllStripes. “When we come together and learn from each other’s experiences, we can push for better treatments across all rare conditions.”
“Giving patients the opportunity to share their medical records across their medical team is vital for quality care and advancing research,” said Kasey Woleben, co-founder of the Cure Mito Foundation.
“This new partnership with AllStripes and the Cure Mito Foundation marks a significant advancement in MitoAction’s commitment to ensure our community is research ready and to take a meaningful and active role in clinical trials and the advancements of therapy development,” said Kira Mann, CEO of MitoAction.
To move this research forward, AllStripes, MitoAction and the Cure Mito Foundation are looking for 50 families affected by Leigh syndrome who are willing to contribute their loved one’s medical records to make this effort as strong as possible. All data shared with researchers is de-identified, or anonymized, meaning no identifying information like name or phone number is shared.
Visit allstripes.com/leigh to learn more.