Ignite Creation Date:
2024-05-05 @ 11:36 AM
Last Modification Date:
2024-10-26 @ 9:10 AM
Study NCT ID:
NCT00082108
Status:
RECRUITING
Last Update Posted:
2024-07-10
First Post:
2004-04-29
Brief Title:
Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy Registry
Sponsor:
University of Rochester
Organization:
University of Rochester
Study Overview
Official Title:
National Registry of Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy Patients and Family Members
Status:
RECRUITING
Status Verified Date:
2024-07
Last Known Status:
None
Delayed Posting:
No
If Stopped, Why?:
Not Stopped
Has Expanded Access:
False
If Expanded Access, NCT#:
N/A
Has Expanded Access, NCT# Status:
N/A
Acronym:
None
Brief Summary:
Myotonic dystrophy DM and facioscapulohumeral muscular dystrophy FSHD are inherited disorders characterized by progressive muscle weakness and loss of muscle tissue The purpose of this registry is to connect people with DM or FSHD with researchers studying these diseases The registry will offer individuals with DM and FSHD an opportunity to participate in research that focuses of their diseases The registry will also help scientists to accomplish research on DM and FSHD and to distribute their findings to patients and care providers
Detailed Description:
The National Registry of DM and FSHD Patients and Family Members was developed to create a link between patients and scientists in order to promote research on these rare illnesses The Registry is sponsored by the National Institutes of Health
Patients that are interested in joining the Registry can email or call to request an application or download the forms from the website wwwdystrophyregistryorg The Application packet contains
A Patient Information Form which asks about your muscle strength general health and how your disease affects your daily life
A Medical Records Release Form which allows us to contact your doctor and obtain records about your diagnosis
An informed Consent Form which describes the studys purpose and what you can expect while you are involved with the project
After you are enrolled in the Registry there are several ways to participate in research The activities include
Complete an annual update form to help us keep track of how your symptoms change over time
Receive updates about the progress of the Registry research highlights and other news related to muscular dystrophy through newsletters an email listserv and Facebook
Receive letters from the Registry when researchers are looking for patients to take part in studies These projects may include filling out questionnaires exploring new treatments and other types of research
There is no obligation to participate in these activities Taking part in any study or filling out the annual updates are completely up to you
Patients that are interested in joining the Registry can email or call to request an application or download the forms from the website wwwdystrophyregistryorg The Application packet contains
A Patient Information Form which asks about your muscle strength general health and how your disease affects your daily life
A Medical Records Release Form which allows us to contact your doctor and obtain records about your diagnosis
An informed Consent Form which describes the studys purpose and what you can expect while you are involved with the project
After you are enrolled in the Registry there are several ways to participate in research The activities include
Complete an annual update form to help us keep track of how your symptoms change over time
Receive updates about the progress of the Registry research highlights and other news related to muscular dystrophy through newsletters an email listserv and Facebook
Receive letters from the Registry when researchers are looking for patients to take part in studies These projects may include filling out questionnaires exploring new treatments and other types of research
There is no obligation to participate in these activities Taking part in any study or filling out the annual updates are completely up to you
Study Oversight
Has Oversight DMC:
None
Is a FDA Regulated Drug?:
None
Is a FDA Regulated Device?:
None
Is an Unapproved Device?:
None
Is a PPSD?:
None
Is a US Export?:
None
Is an FDA AA801 Violation?:
None
Secondary IDs
| Secondary ID | Type | Domain | Link |
|---|---|---|---|
| U54NS048843 | NIH | None | httpsreporternihgovquickSearchU54NS048843 |