Questionnaire

Nail Patella Syndrome

Questionnaire

In all my years of NPS research it has never ceased to amaze me at how similar we all are ... yet how much our characteristics vary, even within one family! With this questionnaire, I would like to collect data to see which characteristics are the most common, the least common and also to see if there might be some strangely common characteristics that we exhibit that have not yet been attributed to NPS.

From time to time I have been approached by members of the medical profession to provide documentation of the frequency of some of the characteristics exhibited. Be assured that although I may provide numbers, I NEVER release any personal information. The only information that I might provide would be a statement like the following: "Out of 67 respondents, 19 report thyroid problems". This is only to give the doctors and research scientists an indication of whether the incidence of that particular problem is higher than the non-NPS population, and whether it would be pertinent to do further research into a connection with that condition and NPS.

If you are interested in providing information for this purpose, please cut and paste the following questionnaire, fill it out and return to me at: PACALI@aol.com Your name is requested to make sure we don't collect duplicate information from the same people. Please include your location, if you want to, as it is interesting to see how people with NPS are spread all over the world. Your participation is purely voluntary, but will be gratefully appreciated. Thank you.

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To complete the questionnaire, highlight it, copy it, paste it into e-mail ... fill it out and send it to me. Please indicate whether you have a particular characteristic by indicating "yes" or "no" (you may explain further if you want to) and add any other conditions that you have that may or may not be linked to NPS at the end.

Name:

Address (or location):

e-mail address:

Date of birth:

Sex:

Ancestry: (ie. English, Irish, German, etc)

Do you have NPS, or is it a spouse or other family member?

If it is you or your spouse, how many of your children are affected?

Characteristics

Please note how each of the following are affected.

Fingernails (which ones and severity):

Knees:

Elbows:

Hips:

Back:

Feet:

Legs:

Kidneys:

Eyes (Glaucoma):

Small stature:

The following conditions may or may not be related to NPS - Please indicate if you have any of the following:

Shoulder problems

Digestive disorders (IBS, etc)

ADD/ADHD

Recurrent urinary tract infections

Pre-eclampsia/Toxemia of pregnancy

Cleft palate/Hair lip

Diabetes

Colon Cancer

Waddling gait

Delayed bone age

Keratoconus

Localized dysplasia of the muscles

Spina Bifida Occulta

Spondolythiasis

Extosis of the pubic bone

Senile dementia

Madelung deformity of the wrist

Alport syndrome

Arnold-Chiari malformation due to arthritis

Haglund deformity of the heel

Poor teeth

Widows peak

Clover pattern in the iris

Any others?