Re: UPDATE -New Research Project - RDCRN and CMTA - Recruiting

[Guest guest]

Hi Everyone,

Some of you may have been confused by the new Rare Diseases

Clinical Research Network registry. I was, as were many

of you, confused about the difference between this registry and the

other registries and database forms.

This new patient Registry is something for everyone with CMT to fill out,

especially if you want updates about future research studies involving patient

enrollment. This way, instead of looking for CMT studies to join, enrolled

participants will receive direct e-mails concerning ongoing research studies and

updates.

Dr. Shy is the physician collecting all the data for the RDCRN, so we're

in good hands. It is a very easy, non-time consuming form, and it is not

necessary to know your specific subtype.

All this information will ultimately be accumulated and streamlined to the

centers of excellence across the United States. So if you or have already filled

out forms from one of the Centers of

Excellence, including Wayne State University, or have completed the

national database forms, I encourage you to still register online

with the RDCRN, so that you will receive regular updates about

clinical trials and studies going on across the country which you or

your family might join.

In my original post below, I listed the 3 currently recruiting studies.

Gretchen

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> Working together with the Rare Diseases Clinical Research Network (RDCRN), the

CMTA invites you (or your child) to participate in a research project that will

develop a nation-wide registry for patients.

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> Why Join?

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> The RDCRN Patient Contact Registry is a method by which patients with rare

diseases can register themselves with the RDCRN in order to be contacted in the

future about clinical research opportunities and updates on the progress of the

research projects. The contact registry is anonymous and free of charge.

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> Information contained within this registry will be used for recruitment to

research studies directed at improving our knowledge and treatment of people

with CMT.

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> Patients who participate in this research will make it possible for scientists

to find new treatments, create new studies, and work for the improvement of all

our lives.

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> What do you have to do to join?

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> Register. After you have read and agreed to the Authorization, the Registry

form will appear on your screen. You will be asked for information such as your

(or your child's) type of CMT, name, address, birth date, place of birth, email

address, and other items relevant to your (or your child's) disorder.

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https://rarediseasesnetwork.epi.usf.edu/rdnwebapp/registry/RDCRNRegistryConsent.\

aspx?OwnerId=3583 & DiseaseType=242

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> Concerned about your privacy?

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> Once you have entered and submitted this information online, the data will be

stored in a secure, computerized database. No personal identifying information

(such as your name, address, or telephone number) will be given to anyone

without your expressed approval.

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> How will I be notified of research studies and updates?

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> You will be notified via email when a study is recruiting or when there are

updates to research being conducted.

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> To find out about studies currently recruiting, please see below section.

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> RDCRN Studies Currently Recruiting

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> The following studies are now enrolling patients

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> 6601: Natural History Evaluation of Charcot Marie Tooth Disease

> This is a longitudinal study of individuals with CMT. Those participating in

this study will be invited to be re-evaluated every year. There is no cap on the

number of participants who can enroll - all people who meet the inclusion

criteria are encouraged to participate.

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> 6602: Genetics of CMT - There are two aims of this study: finding genetic

modifiers for CMT1A, and finding new genes that cause CMT2.

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> 6603: Development of CMT Peds Scale for Children with CMT

> Information about how different forms of CMT affect children is not readily

available because there are not good methods to measure impairment of children

with CMT. The purpose of this project is to develop and test such a method and

to then test this scale to ensure that it is an effective measurement of

impairment of CMT in children, that the children tolerate it well, that

different investigators using this method obtain similar results and that

changes over time with the scale allow measurement of progression of CMT in the

children.

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