National MHE Research Registry Clinical Questionnaire Online Submission
Name given when diagnosed?
I have been diagnosed with MHE / MO / HME, I do not have any other
symptoms other then having few exostoses
Yes
 No
Height:
Weight:
Age of diagnoses of MHE / MO / HME:
Age of first surgery:
 Age of last surgery:
Do you have a family history of MHE / MO / HME ? If yes
please fill in family members (son, daughter,.....
Yes
No
If your MHE is hereditary, what side of the
family did it come from mother or father
Number of affected generations, Family Tree:
Number of surgeries you have had:
Sites of Exostoses / Osteochondromas
Hands
Number of exostoses ?
Location of surgeries ?
Ages at times of surgery
Hands:
Yes
No
Fingers
Number of exostoses?
Location of surgeries ?
Ages at times of surgery
Fingers:
 Yes
No
Wrists / Elbows
Number of exostoses ?
Location of surgeries ?
Ages at times of surgery
Wrists
Elbows:
Yes
 No
Forearms
Number of exostoses ?
Location of surgeries ?
Ages at times of surgery
Yes
Forearms:
No
Scapula
Number of exostoses ?
Location of surgeries ?
Ages at times of Surgery
Yes
Scapula:
 No
Shoulders /
Upper Humerus
Number of exostoses?
Location of surgeries ?
Ages at times of surgery
Shoulders /
Upper Humerus:
Yes
 No
Pelvis / Hips
Number of exostoses ?
Location of surgeries ?
Ages at times of surgery
Pelvis / Hip:
 Yes
No
Lumbar / Cervical Spine
Number of exostoses ?  
Location of surgeries ?
Ages at times of surgery
Lumbar
Cervical
Spine:
Yes
No
Knees
Number of exostoses ?
Location of surgeries ?
Ages at times of surgery
Yes
Knees:
 No
Ankles
Number of exostoses ?
Location of surgeries ?
Ages at times of surgery
Yes
Ankles:
No
Feet
Number of exostoses?
Location of surgeries ?
Ages at times of surgery
Feet:
 Yes
 No
Toes
Number of exostoses?   
Location of surgeries ?
Ages at times of surgery
Toes:
Yes
No
Ribs
Number of exostoses?
Location of surgeries ?
Ages at times of surgery
Ribs:
Yes
No
Skull / Jaw / Mouth
Number of exostoses ?
Location of surgeries ?
Age at times of surgery
Skull
Jaw
Mouth:
Yes
 No
No
Yes
Have you or your family had genetic testing for MHE / MO / HME ?
Have you had any complications such as(Blood vessel entrapment,
tendon entrapment, nerve entrapment, muscle entrapment ......)?
Yes
 No
Yes
Other Parts of the body where exostoses are located?
 No
Have you ever been diagnosed with Osteoporosis,
weak soft bone, easy to fracture ?
Yes
 No
Yes
Do you have Leg limb-length discrepancies?
 No
No
Yes
Have you had Leg Fixator surgery?
Yes
Have you had Stapling surgery legs?
 No
Yes
No
Do you have Bowing in legs?
Yes
Have you had Stapling surgery on Forearms ?
 No
Yes
Have you had Fixator surgery on the Forearms ?
 No
Shortening of Forearm or bowing ?
Yes
No
Has a doctor told you that you have required surgery,
and you have not had that surgery done?
Do you have any Muscle Weakness? and where is it located?
Yes
 No
Do you suffer from Chronic Fatigue ?
Do you have problems standing ?
 Yes
 No
Yes
Do you have problems sitting?
 No
Do you have problems walking ?
 Yes
 No
Yes
Do you have problems writing or typing ?
 No
Do you have X-rays taken?
Yes
No
Do you see a doctor for your MHE?
Yes
 No
Do you experience Chronic pain?
 Yes
No
I do not experience pain related to my MHE
 Yes
No
Have you ever seen a chronic pain specialist?
 Yes
No
Yes
Do you take over the counter medications for pain?
No
Do you take medically prescribed pain medication?
 Yes
 No
What other things do you use when you have pain such as heat packs,ice packs, pain creams........
Do you have any texture related issues with food or clothing?
 Yes
 No
Yes
No
Do you or have you suffered from depression ?
Do you or have you suffered from anxiety ?
 Yes
No
Are you a social person,?
Do you like being in small groups of people
or alone? Please write in field area
Yes
No
Do you have any Heart defects?
 Yes
No
Yes
Do you eye problems of any kind?
 No
Do you have wound healing problem Keloiding / Scarring ?
 No
Yes
Yes
 No
Do you have stomach or intestinal problems of any kind?
Have you ever developed a chondrosarcoma?
 Yes
No
What kind of surgery and or treatment did you require?
At what age were you diagnosed with Chondrosarcoma ?
Is there a family history of any type of cancer in your family?
 Yes
 No
Yes
No
Do you have dental problems ?
Yes
No
Do you have any other medical conditions?
Have you had any other testing?Examples , Endocrinology, Liver, Kidney.......
No
Do you have any special needs?
 Yes
Yes
Do you have any learning disabilities ?
 No
Yes
Do you have a Special Education Plan and or special accommodations at work ?
 No
Does your MHE restrict your life in any way?
Yes
 No
Do you have health insurance?
Any other comments:
This lower field of questions must be answered in order to submit this
clinical questionnaire form
Yes
I have submitted the MHE National Research Registry Form?
I have read, understand and agreed with the terms as written in the MHE National
Research Registry Clinical Questionnaire and website page
http://www.mheresearchfoundation.org/MHE_National_Research_Registry_Registration
_Form.html

I understand I can withdraw at any time by emailng or writing Sarah Ziegler,
Executive Director of the National MHE Research Registry.
Yes
Registrants Name:
Name of parent or guardian
if this form is being submitted for a minor:
Email Address:
Your Home Mailing Address:
Date of birth and current age?
Your home phone number
and or cell phone number: