Recurrent Respiratory Papillomatosis Foundation

Are you a patient receiving treatment for Recurrent Respiratory Papillomatosis? Please help us by taking this survey so we can create a comprehensive epidemiological database of patient information. Your personal confidentiality will be maintained at all times.

Stay connected with us and join our Recurrent Respiratory Papillomatosis Foundation email listserve. This listserve is intended for patients, family members and professionals dealing with Recurrent Respiratory Papillomatosis as well as related diseases and conditions. It is meant to connect members of the RRP community with each other and to supplement the webpage, other organizational websites, the RRPF Newsletter and message board of the RRPF.
To subscribe, simply send a blank email to: RRPF-subscribe@yahoogroups.com

Learn About Adjunctive Therapies

Adjuvant or adjunct therapies are generally considered non-surgical treatments that are used along with surgical excision of papilloma to reduce or eliminate the need for surgery.

Adjunct Therapy and Protocol Update:

The following reports of statistics and clinical research involving RRP therapies, represents a best effort to make an accurate and objective presentation of information from surveys, articles submitted by investigators, personal communications and reference to literature. Where appropriate the RRPF has provided its input in a constructive manner which we hope will best serve the RRP community.

Table 1. Patient/family assessed impact of adjuvant therapies reported (Summer 2002).

1. In most cases the patient/parent has not specifically noted whether they are using I3C or DIM. Please help us assess the impact of DIM vs. I3C by including the specific name of the product that you are using.

Experimental therapies for which the RRPF has no documented patient supplied statistics:

Cimetidine (Tagamet)

HPV Vaccines

Omega-3 Fatty Acids (Fish Oil)

Some notes regarding the above table:
The therapies are abbreviated as follows, I3C/DIM = indole-3-carbinol (I3C) or Diindolylmethane (DIM), IFN = interferon, Acyc = acyclovir, PDT = photo dynamic therapy (*thus far only 1 patient has reported who has used the new agent mTHPC and they have indicated a complete response) , Ribvrn = ribavirin, Retin = retinoicacid or accutane, Mumps = mumps vaccine. In the category of other therapies used, improvement has been noted using the following treatments: Echinacea and Thuja (homeopathic anti-virals), a mixture of vitamins including vitamin C and vitamin A, ShapeRite immune formula, topical 5-flourouracil (5FU), bleomycin and cobalt. (Please see the I3C Update in the RRP newsletter issues, regarding side effects for some of these treatments.)

Patient Statistics

The statistics that follow are based on RRPF questionnaire responses. Although suggestive trends are apparent, there has been no attempt to determine statistical significance, so caution is urged in drawing conclusions from the numbers below. In addition to these data, results regarding adjuvant therapies are presented on page 5. Tables 1 – 3 provide a breakdown of the patients in the support group who have reported to us, based on sex and age; the sample sizes range from 486 to 547 for tables 1-3.

Table 2. Total number of patients in support group reporting.

Table 3. Distribution of patients based on current age brackets and sex.

Table 4. Distribution of patients based on diagnosis age brackets and sex.

Table 5. Distribution of respiratory papilloma sites of involvement based on responses from 367 patients.

Table 6. Distribution of surgeries for RRP

Table 7. Answers to some RRP research questions.