Preliminary Informational Study on MHE and Scarring

The MHE Coalition would like to conduct a preliminary informational study on MHE and Scarring and would appreciate hearing from our membership. Healing has been a problem for many of our members and we would like to know how many members have had keloid or hypertrophic scar formation.  (Keloid: an abnormal scar that grows beyond the boundaries of the incision site.  Hypertrophic:  a widened or unsightly scar that does not extend beyond the original boundaries of the incision; reaches a certain size, and then stabilizes or regresses). If you have not had this problem, we still need your input to get the percentages of our membership that is affected by this problem. All of your personal contact information will be kept confidential. An identification number will be assigned to each form sent back. All personal contact information will be eliminated before being released to the researcher investigating scarring formation in people with MHE. If you (or other family members) have this type of scarring and would like to participate in this study, please fill out the attached form, including photos, if possible. For those with normal scarring, please fill out the form – no photos are necessary.  All forms and accompanying photos should be mailed to:  Sarah Ziegler, National Director and Coordinator of Research, The MHE Coalition, 149-34 16th Road, Whitestone, NY 11357.     Once again, we hope that there will be a good response from our members to this request for information and participation.  If you have any questions, please contact Sarah at 718-747-1701, Cell (917) 841-2217, or email her at dinosarah@prodigy.net

Name:         ___________________________________________________________________________ Address:     ___________________________________________________________________________ City:           __________________________ State:________________ Zip Code:____________________                Telephone No.:_____________________________   Email Address:_____________________________ [For Coalition use only:  ID #_____] Directions:  For normal scarring, no photos or measurements are needed.  For keloid or hypertrophic scars, if possible please include a photo showing post-surgical scarring for each surgery (photos should be marked with the patient’s first name only and the Surgery Number from below).   However, while photos are helpful, they are not required.  Using a tape measure, please measure the scar/keloid in centimeters at the widest dimensions.  Check keloid if you are unsure whether a scar is keloid or hypertrophic.  Please supply the following information for each surgery and attach additional pages if necessary, continuing to number the surgeries: Surgery #1. Part(s) of body that surgery was performed on:_________________________________ ___________________________________________________________________________________ Year of Surgery:_____ Age at Time of Surgery:_____ Surgical Procedure:______________________ ___________________________________________________________________________________ Type of Scarring (Check all that apply):  Normal_____   Keloid________ Hypertrophic_____________  Dimensions of  Keloid or Hypertrophic Scar(s):_____________________________________________ ___________________________________________________________________________________ Have you had cosmetic surgery or other treatments (including steroid injections, silicone sheet dressings, etc.) on the keloid/scar? _________________________________________ If yes, what was the outcome: ____________________________________________________________________ ___________________________________________________________________________________ Surgery #2. Part(s) of body that surgery was performed on: _________________________________ ___________________________________________________________________________________ Year of Surgery:_____ Age at Time of Surgery:_____ Surgical Procedure: ______________________ ___________________________________________________________________________________ Type of Scarring (Check all that apply):  Normal______   Keloid______  Hypertrophic_____________  Dimensions of  Keloid or Hypertrophic Scar(s): ____________________________________________ ___________________________________________________________________________________ Have you had cosmetic surgery or other treatments (including steroid injections, silicone sheet dressings, etc.) on the keloid/scar? _________________________________________ If yes, what was the outcome: ___________________________________________________________________ __________________________________________________________________________________ Surgery #3. Part(s) of body that surgery was performed on: ________________________________ __________________________________________________________________________________ Year of Surgery:_____ Age at Time of Surgery:_____ Surgical Procedure:______________________ __________________________________________________________________________________ Type of Scarring (Check all that apply):  Normal_____ Keloid_______ Hypertrophic______________  Dimensions of  Keloid or Hypertrophic Scar(s):____________________________________________ __________________________________________________________________________________ Have you had cosmetic surgery or other treatments (including steroid injections, silicone sheet dressings, etc.) on the keloid/scar? _________________________________________ If yes, what was the outcome: ____________________________________________________________________ ___________________________________________________________________________________ Surgery #4. Part(s) of body that surgery was performed on: _________________________________ ___________________________________________________________________________________ Year of Surgery:_____ Age at Time of Surgery:_____ Surgical Procedure:_______________________ ___________________________________________________________________________________ Type of S carring (Check all that apply):  Normal_____   Keloid_______ Hypertrophic_____________ Dimensions of  Keloid or Hypertrophic Scar(s):____________________________________________ __________________________________________________________________________________ Have you had cosmetic surgery or other treatments (including steroid injections, silicone sheet dressings, etc.) on the keloid/scar? _________________________________________ If yes, what was the outcome: ____________________________________________________________________ ___________________________________________________________________________________ Surgery #5. Part(s) of body that surgery was performed on:__________________________________ Year of Surgery:_____ Age at Time of Surgery:_____ Surgical Procedure:_______________________ ___________________________________________________________________________________ Type of Scarring (Check all that apply):  Normal_____  Keloid_______   Hypertrophic_____________ Dimensions of  Keloid or Hypertrophic Scar(s):_____________________________________________ ___________________________________________________________________________________ Have you had cosmetic surgery or other treatments (including steroid injections, silicone sheet dressings, etc.) on the keloid/scar? _________________________________________ If yes, what was the outcome: ____________________________________________________________________ ___________________________________________________________________________________ If you require more space, please add additional pages as necessary. Mail the form and photos to: Sarah Ziegler, National Director and Coordinator of Research, The MHE Coalition, 149-34 16th Road, Whitestone, NY 11357. I hereby authorize The MHE Coalition to forward by identification number all information I have contributed on this form, including photos, to researchers who are studying Skin Healing and Keloid Formation. I understand that all personal contact information will be eliminated from the form and photos prior to submission. I understand that participation in any research study will not affect my immediate health care; that participation is entirely voluntary, and that non-participation will not influence my medical treatment.  Results of research studies will not be available to individual participants. However, results of these studies may be published in a research journal that will be made available to The MHE Coalition, healthcare providers, and participating families. _______________________________________________________________________              (Signature)                                                                      _______________________________________________________________________ (Date)    ___ I am registered with the National MHE Registry.   ___ I am not currently registered with the National MHE Registry and would like more information.  Please contact me.

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