We would like to invite you to join our multicenter study to discover the genetic susceptibility of recurrent respiratory papillomatosis.

We already have DNA specimens from 385 patients and their parents. The larger the data set the greater the chance of finding the biological susceptibility of the disease. We aim to enroll 540 people with RRP and their available parents. The study is supported by a Research Project Grant (R01) from the NIH. The hypothesis has been spelled out in Buchinsky, F. J.; Derkay, C. S.; Leal, S. M.; Donfack, J.; Ehrlich, G. D.; and Post, J. C. Multicenter initiative seeking critical genes in respiratory papillomatosis. Laryngoscope 114 (Feb 2004): 349-357.

The process is straight forward. Conceptually, taking papilloma and blood specimens from patients and blood specimens from their parents is very simple. However, the execution of such procedures can add time to an already busy schedule. Therefore, any surgeon who provides specimens from six or more patients and their available parents will be invited to become a co-investigator on the study. The co-investigator would be expected to review the data and critique the subsequent manuscripts so that they could be listed as an author on the resulting publication. For those who decline the invitation or for those who collect specimens from 5 patients or fewer, they will be acknowledged for their contributions in all publications. Many potential collaborators are concerned that they will not be able to involve the father of the patient. While a trio (patient + mother + father) provides the most information, a duo (patient + mother) also provides useful information, just not as much. Even a solo (patient with no available parents) is valuable.

Specifics

Currently two ascertainment models: Satellite Design AND Patient-Support Group Design. I am seeking your help for the former. We are seeking both juvenile-onset RRP and adult-onset RRP. So far we have obtained specimens from the following institutions (need to update list):

The deal:

1) Willing and able Surgeon(s) visits Collaborator's Website.
to orient him or herself. Quickest orientation by looking at the link to "Family Flyer" and "Surgeon's Workflow Diagram."

2) Contact Farrel Buchinsky at info@rrpgenetics.orgor single Google Voice telelphone (412) 567-7870

3) Obtain regulatory approval...We can provide guidance. If you are outside the United States please visit our International page.

4) We ship hamper of kits to surgeon

5) Surgeon enrolls patient, obtains blood and papilloma from patient, and blood from biological mother and biological father - if they are available

6) Ships specimens to Pittsburgh, PA at our expense

7) After enrolling 6 patients - invited to become co-investigator - at that stage willing to share all data and will seek input on all analysis and manuscripts therefore can be listed as co-author. No money will be paid to surgeon for their involvement.

Contingencies:

• Surgeon does not wish to participate: A website was created to inform patients and family how they can enroll directly through the Center for Genomic Sciences. Use the URL www.rrpgenetics.org.
• Father is not available: Patient (proband) and mother are still welcome to enroll. Also invite full sibling of proband to enroll.
• No relative is available: Patient (proband) can still enroll eventhough they will not provide as much information as if they were part of a full trio.

Contact Options

1. e-mail: fjbuch@gmail.com
2. instant message
   
   
   
3. call (412) 567-7870