BIOS Course in Developing Health Networks in Rare & Neglected Diseases


Developing Health Networks in Rare & Neglected Diseases (DHNRND) is a unique interdisciplinary course, which explores the development of health networks through the incubation of clinical research and service projects for rare diseases, such as Niemann-Pick Disease type C (NP-C), and neglected diseases, such as malaria and lymphatic filariasis.

The intent of the course is to enable upper level undergraduates and graduate students to learn about and conduct rare and neglected disease clinical research in an in class setting.  It is anticipated that students' experiences will foster their competency as advocates for the research and treatment of these diseases.  Interested students who have taken the course, may be assisted in developing further opportunities for service and learning with several extended communities of concern.

The initial six courses of DHNRND tackled several ambitious projects, including the process of validating a conceptual model and methodology for integrating undergraduates into this kind of research and two disease based investigations.

The first series of investigations was conducted over five classes in a continuous effort to build a robust clinical score for the rare disease, Niemann Pick Disease, type C (NP-C). In this effort, students scored medical records of NP-C patients in class, providing data for clinical score development. This clinical score is anticipated to contribute to the testing of emerging therapeutics and diagnostics. As part of their service goal, students provided NP-C families with medical summary notebooks, which the families could use to expedite record review when seeing new specialists.

In October 2011, the 64 student authors of an article describing their participation in the CRND collaboration with the NIH's Natural History Study for NP-C Disease were pleased to announce that PLoS One had published their article, "Defining Natural History: Assessment of the Ability of College Students to Aid in Characterizing Clinical Progression of Niemann-Pick Disease, Type C." (For additional information on this publication and the process of writing the article, please link to the Publication Announcement ).

A neglected dissease investigation engaged students in establishing the consequences of fever on neurological prognosis, after recovery from infection by a neglected, parasitic disease. Students scored fever charts of malaria patients from Malawi, developed cumulative 'fever load' associated with infections and contributed to clinical decision trees addressing the efficacy of aggressive treatment of fever in reducing subsequent seizures, memory and learning disorders and other neurological sequelae.  As part of this goal, students also provided a service to families and clinicians in Malawi by developing medical history notebooks for them.

In addition to their in class activities, DHNRND students participate in the CRND's Clinical Translational Seminar Series, which offers them the opportunity to interact with some of the nation's foremost investigators and experts in clinical and translational medicine for rare and neglected diseases.

Visit the Clinical Translational Seminar SeriesChronicle page for a view of seminars offered to DHNRND students and the community.



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