Nicole Yanjanin, R.N.,M.S.N. on NP-C Disease & the NIH

March 26, 2010- Nicole Yanjanin, RN, MSN - Teaching a class in Developing Health Networks in Rare and Neglected Diseases.

Nicole Yanjanin, M.S.N., is a Nurse Practitioner and Investigator with the National Institute of Child Health Development (NICDH) . She is a colleague of Dr. F.D. Porter with whom she collaborates on the NICDH's Longitudinal Observational Study of Niemann-Pick type C (NP-C) patients. Ms. Yanjanin discussed the progress of the ongoing NICHD-CRND collaboration and progress toward the Clinical Severity Scale for NP-C.

In her dual roles at NICHD, Ms. Yanjanin treats patients and collects the raw data, which the CRND class is analyzing. The CRND students engaged in a lively dialogue with Ms. Yanjanin about the process of score development and approaches to presenting and utilizing data, given the limitations of a rare disease data set.

Because of her clinical experience, Ms. Yanjanin was able to communicate the personal dimension of patients' experiences and the human significance of scale indicators such as problems with eye movement, speech, fine motor skills, swallowing, ambulation, hyperreflexia, incontinence, etc. Ms. Yanjanin also shared her enthusiasm and commitment to the patients and families she sees: "I never thought that patients would be sending me Christmas cards and I would know their after school activities. The families are so motivated and the research is so interesting that it's very easy to get pretty exited about it."

Throughout the discussion, students related their own experiences of awakening and concern in relationship to the courageous stories they encountered in the charts of NP-C patients. Ms. Yanjanin told students, "By having all of you participate in this... the more patients we [can] add to this, the more generalizable it is. Adding numbers to this will help NPC research in the future...it seems like numbers and people you can't put faces to...but, it's really a huge help what you're doing and your doing a great job."

 

 

 

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