RRPF Patient/Therapy Survey

Return email Address:   

Person submitting form:

Today's Date: (mm-dd-yy)

If this is new patient information check here     

If this is an update for a patient already registered with the RRPF check here
(Only provide your name and that information you wish to update)

Names and Phone Numbers:

Patient Name:   Social Security #

Parent/Guardian:

Mailing Name:      

Address Line 1:     

Address Line 2:     

City:        State:        Zip:

Home Phone:   Work Phone:     (area code-number)

Fax Number: 

E-Mail Address:   

If this is a new address check here               

If you do not want to be included in the RRP patient/family directory check here               

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Are you willing to particpate in future surveys relating to RRP and treatment?     Yes     No

I grant permission to the RRP Foundation to share the information contained in this questionare with bonafide RRP/HPV researchers:  Yes   No

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Family/Birth History    

                      (check all conditions  that apply)        

 

	(mm-dd-yy) Birthdate	RRP	Genital Warts	Skin Warts	Asthma
Patient
Mother
Father
Brother #1
Brother #2
Sister #1
Sister #2

Considering only the siblings born of the Patient's birth mother,
was the Patient the first born?    Yes No Unknown

Age at diagnosis of RRP: 

Patient Sex:  Male Female no entry

(Optional) Ethnic Info: Hispanic or Latino Non-Hispanic or Latino no entry

(Optional) Racial Info: American Indian or Alaska Native Asian Black or African Amer. Native Hawaiian or Other Pac Islander White no entry

Type of birth delivery:  Vaginal Cesarean Section Unknown

Is Patient adopted?  Yes No Unknown

Was Patient nursed?  Yes No Unknown

Was Patient exposed to smoke before diagnosis?  Yes No Unknown
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Symptoms:            Hoarseness:  Yes No no entry             Age at Onset:

                   Breathing Disorder:  Yes No no entry             Age at Onset:          

               Swallowing Disorder:  Yes No no entry             Age at Onset:  
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Current Status             Active papilloma regrowth:  Yes No Unknown

                                        Voice Normal:   Yes No Unknown

                                        Breathing Normal at Rest:   Yes No Unknown

                                        Breathing Normal during Exercise:  Yes No Unknown

                            Remission since: (no papilloma removal)  (mm-dd-yy)

                                        Date of last visual check:  (mm-dd-yy)

   If voice not  normal (check one):    Slightly Hoarse        Severly Hoarse           

RRP has significantly impacted patient and/or family as follows: (check all that apply)
                 Physical               Emotional              Financial 
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Treatment        Total number of operations for papilloma removal:  1-10 11-25 26-50 51-75 76-100 >100 >200 no entry

                            Actual   total number: 

                            Number of operations in last 12 months: 

                            Date of first operation:  (mm-dd-yy)

                            Date of most recent operation:  (mm-dd-yy)

                            Describe any significant variability in surgical frequency:
                           

                            HPV Type:  HPV 6 HPV 11 HPV 6/11 Other Unknown Specify (if not on list)

                            Indicate all the major sites of involvement: (check all that apply)
                                        Above the vocal cords               
                                        At the level of the vocal cords 
                                        Below the vocal cords                
                                        Trachea                                         
                                        Bronchial    
                                        Lung    

                            Have you ever had a tracheotomy?  No Yes Unknown                                   

                            Date of first tracheotomy:  (mm-dd-yy)

                            Date of removal:  (mm-dd-yy)

                            Presently wear a tracheotomy tube?  Yes No no entry

                            Have you ever received x-ray treatments?  Yes No Unknown
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Adjuvant Treatments for papillomatosis are treatments other than the standard laser surgery.
           

If you have not had an adjuvant treatment for papillomatosis:

    Would you be interested in receiving any?   Yes No no entry

Whether you have used adjunct treatments or not, how has your disease changed over the last 5 years?   No change Partial improvement Complete improvement Worse no entry

If you have had any adjuvant treatment for papillomatosis please provide information below:

Result of Treatment (Check Only One)

Adjuvant Therapy	From (mm-dd-yy)	To (mm-dd-yy)	Dosage	Complete Response	Partial Response	No Response	Too Soon To Tell
Interferon
Brand:
I3C
I3C Deriv. (DIM or B3IM)
Brand:
Cis-retinoic Acid
Methotrexate
Acyclovir
Photo Dynamic Therapy (PDT)
Chemical Agent:
Ribavirin
Mumps Vaccine
Cidofovir*
Other
Specify:

*Cidofvir dosage information should include the actual drug dosage used, if known, (eg. 1mg/kg) plus the number/frequency of intra-lesional injection episodes. Use comments area below ifmore space is needed.

Additional Comments

What (if any) were the side effects?

Thank you for taking the time to complete this survey.        

You may want to print out a hardcopy of this form as a backup for your records, before submitting        

Please confirm your submission by sending e-mail to bills@rrpf.org