In a public press release this week, ThinkGenetic announced that Stealth BioTherapeutics (Stealth) has funded content design, content creation, and clinical trials advertising for mitochondrial diseases. As a first step in this partnership, ThinkGenetic has published valuable, patient-friendly medical information about mitochondrial disorders, including key definitions of primary mitochondrial disease and primary mitochondrial myopathy. Stealth is supporting further content development for specific diseases, including primary mitochondrial myopathy, Leber hereditary optic neuropathy (LHON), and Barth syndrome.
Stealth BioTherapeutics is an innovative biopharmaceutical company developing therapies to treat mitochondrial dysfunction associated with genetic mitochondrial diseases and common diseases of aging. Their team works with patients and advocacy organizations to better understand their journey and raise awareness of the unmet need that programs seek to address.
Vice President, Communications and Patient Advocacy at ThinkGenetic, Inc., Deepti Babu, stated, ““The work we are doing will shine a light on mitochondrial diseases and help people learn if a mitochondrial abnormality could potentially be the root of their health problems. Mitochondrial disease is a group of complex genetic disorders associated with numerous symptoms, many of which are often associated with other common medical conditions. This can increase the chance of an incorrect diagnosis and delay the time to an accurate diagnosis. With Stealth’s partnership in the development of this content, we hope to shrink the time needed for an accurate diagnosis.”
As for the future, additional mitochondrial diseases and disease-specific content will continue to be developed in 2018. Those additional mitochondrial diseases will ultimately be included in the ThinkGenetic SymptomMatcherTM, a diagnostic aid developed to help undiagnosed individuals learn how their symptoms align with genetic disease possibilities, including mitochondrial disease. The ThinkGenetic SymptomMatcher application and in-depth medical content is free for patients and families on ThinkGenetic.com. ThinkGenetic is taking a patient-first approach with SymptomMatcher. Based on the collective expertise from helping patients and families in the clinic, genetic counselors at ThinkGenetic create a curated knowledge base of symptoms and “Patient Experience” stories written in clear everyday language to capture what it is like to live with a genetic condition. When combined with a mobile-friendly user interface and proprietary algorithms that consider the decision-making process of a clinical genetic specialist, users can perform a self-assessment that generates a short list of possible genetic diseases associated with their specific symptoms. SymptomMatcher generates a unique detailed report, which users can print and use as a tool for discussion with their doctor. Improving visibility and access to SymptomMatcher to help more people with undiagnosed diseases is the top priority for ThinkGenetic in 2018.
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