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•  The Neuromuscular Clinic at Wayne State University and the University of Minnesota are jointly studying families with HNPP and CMT over time (longitudinal study). They have particular expertise in this area. Wayne State also has a physiatrist who deals with patients with painful neuropathies. More can be learned about this project at their web site : Wayne State Neurology Research. Scroll about half way down to the Charcot Marie Tooth research under the neuromuscular section. Individauls with HNPP who would like to participate in these studies can contact the doctors below. There are no costs to the participant (nor is there compensation), but valuable information can be obtained through testing and speaking with these doctors. Based on findings and the desires of the study participant, referrals can be made to other specialists at the clinic ( Rehab medicine doctors, physical or occupational therapists, orthopedists, etc). Costs may be incurred for these referrals.
• 2/2001, Dr Lewis adds: " We would be most interested in seeing any HNPP patients. We have some particular questions re: HNPP that we believe we can answer by evaluating a number of families. The testing and examinations are done in 1 to 2 days. Families can stay in our guest housing and the evaluations include genetic history and counseling, rehabilitative consultation, quantitative sensory and motor testing and nerve conduction studies. There is no charge for any of this,but families have to pay for travel expenses. "

  If you would be interested in participating in this research contact:

  At Wayne State:
  Richard Lewis or Micahel Shy
  Department of Neurology
  Wayne Sate U. School of Medicine
  UHC 6E
  420 St. Antoine
  Detroit, MI 48201
  Phone (313) 577-1245
  e-mail: rlewis@med.wayne.edu
   

   At the University of Minnesota:

  Gareth Parry, MD FACP
  University of Minnesota
  Minneapolis, MN
  e-mail : Parry001@maroon.tc.unm.edu

   Please note. 1/00 Dr. Parry is on sabbatical and can be reached at: Gareth P@ahsl.co.nz

• The University of Minnesota is studying the phenotype varaibility of HNPP. Phenotypes are the different symptoms and ways that HNPP can look even though all the types are caused by the same gene problem. For instance some people have high arches and some don't, even though they both have the same deletion in chromosome 17. In time, hopefully there will be a more thorough understanding of all the different sypmptoms of HNPP.

   Last updated: 2/01

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