Longitudinal Study of Neurodegenerative Disorders

Brief Title

Longitudinal Study of Neurodegenerative Disorders

Official Title

Longitudinal Study of Neurodegenerative Disorders

Brief Summary

      The purpose of this study is to understand the course of rare genetic disorders that affect
      the brain. This data is being analyzed to gain a better understanding of the progression of
      the rare neurodegenerative disorders and the effects of interventions.
    

Detailed Description

      Patients would be evaluated by a multidisciplinary team at specific time points every 3
      months the first year, every 6 months the second year and once a year thereafter.
    


Study Type

Observational


Primary Outcome

Cognitive development

Secondary Outcome

 Exploratory biomarkers

Condition

MLD

Intervention

Palliative Care


Publications

* Includes publications given by the data provider as well as publications identified by National Clinical Trials Identifier (NCT ID) in Medline.

Recruitment Information


Recruitment Status

Other

Estimated Enrollment

1500

Start Date

January 11, 2012

Completion Date

January 2035

Primary Completion Date

January 2030

Eligibility Criteria

        Inclusion Criteria:

          -  Any patient with a genetic neurodegenerative disorder

        Exclusion Criteria:

          -  none
      

Gender

All

Ages

N/A - N/A

Accepts Healthy Volunteers

No

Contacts

, 412-692-6351, [email protected]

Location Countries

United States

Location Countries

United States

Administrative Informations


NCT ID

NCT03333200

Organization ID

STUDY19020318


Responsible Party

Principal Investigator

Study Sponsor

University of Pittsburgh


Study Sponsor

, , 


Verification Date

November 2020