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Digital Health A New Approach For Rare Disease Management And Researches


Digital Health A New Approach For Rare Disease Management And Researches


While digital health is yet in its infancy within the clinical research field, discussion on the improvement of trial design and its potential for rare disease subjects is very exciting.


Rare disease management presents big challenges for patients, families and clinicians. Now clinical management system is at the forefront as a potential game changer in the clinical research industry. Mobile technology such as ResearchKit could efficiently alter the conduct of clinical trials, including key operations like subject engagement, trial design and data collection.


While with many applications there are expecting many effect on all therapeutic areas, one notable being the potential benefit to rare disease research. The capabilities of mobile technology for rare disease studies could ease unique operational difficulties, improve researches and increase quality of life for subjects.


1. Longitudinal studies are


research methodologies in which the same people are studied for over longer periods of time. Advantages of this study design includes the opportunity to examine natural historyof human behavior, emergence and progression of disease, and the effects of various interventions over years and decades. Perhaps the most famous and significant study of this type is the Framingham Heart Study which began studying with a local population in Massachusetts in 1948. It was started to determine risk factors for cardiovascular diseases. In 2002 the study began examining the third generation of the original participants. This type of studies are critical in understanding rare disease which require data pooled from as many patients as possible.


This study proved that longitudinal studies are attainable over many decades and they can produce significant results from accumulated data. Digital health tools today have the ability to gather data from huge patient populations real-time. Thus can result in the discovery of rare diseases too.








2. Under-discovered data


There is no bigger waste than important data which is stagnant and/or undiscoverable. The importance of this model is amplified with rare diseases. Analytics give life to data because it is presented in useful and understandable ways and could, with some technologies, be customized spontaneously with regards to type of data collected or presentation.


3. Incorporation of genomics in registries. Genomics has played an important role in the discovery and ongoing expansion of knowledge bases in rare disease. The US Department of Health and Human Services has a Genetics and Rare Diseases Information Center for the public and has established the Rare Disease Clinical Research Network which has over 20 rare disease research consortia. This will facilitate the sharing of the complete array of data pertinent to these patients among providers and experts.


4. Involvement of caregiver


The proliferation and success of documentaries and films about rare diseases speaks to the human experience pertinent to all patients and caregivers in the field of rare diseases. Many of these films reveal the importance of shared experience. Social media groups are proving essential tools for engrossing information among caregivers.


5. Comprehensive communications and monitoring tools


Digital communication can take many forms like it can involve the initial transmission of data or teleconference between a referring physician to an expert. It can include messaging of symptom status with transmission of remote monitoring data between peersand updates of developments in researches or inferences among researchers, or the exchange of messages among caregivers.


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