Emotional experience of ALS/FTD research participation

Overview

Official title

Emotional Experience of Participating in Research for People at Risk of ALS/FTD

Brief title

Emotional experience of ALS/FTD research participation

Registration type

Institutional study

NCT number

Not stated

Status

Recruitment status requires confirmation

Study category

ALS/FTD, Presymptomatic, Observational

Sponsor / center

Emory University

Research center

Emory ALS Center

Collaborators

Not stated in the official study record.

Study type

Observational study

Phase

Not applicable / observational

Enrollment

Not stated in the official study record.

Start date

Not stated in the official study record.

Primary completion date

Not stated in the official study record.

Estimated / actual completion date

Not stated in the official study record.

Last source update

Not stated in the official study record.

What is being studied?

The official Emory page describes eligibility for adults age 18 or older who had ALS/FTD genetic testing and were identified as mutation carriers or opted out of receiving results, and who participate in observational research for asymptomatic ALS/FTD mutation carriers such as PiCALS, Pre-fALS, DIALS, or ALLFTD.

Intervention(s)

Not stated in the official study record.

Who may be eligible?

This is a simplified summary. The official study team or research center determines eligibility.

Population / disease status

Presymptomatic gene carrier, At-risk family member, ALS-FTD where applicable

Diagnosis / conditions

ALS/FTD

Age

18 Years to Not stated in the official study record.

Disease duration

Not stated in the official study record.

Respiratory criteria

Not stated in the official study record.

ALSFRS-R criteria

Not stated in the official study record.

Genetic criteria

The official eligibility criteria include language relevant to this topic; review the full criteria below.

Medication requirements

Not stated in the official study record.

Official center study description

The official Emory page describes eligibility for adults age 18 or older who had ALS/FTD genetic testing and were identified as mutation carriers or opted out of receiving results, and who participate in observational research for asymptomatic ALS/FTD mutation carriers such as PiCALS, Pre-fALS, DIALS, or ALLFTD.

Genetics

Gene-specific study?

Not stated

Gene or variant

Other specified ALS gene

Genetic test required?

Yes

Known carrier required?

Yes

Confirmed pathogenic variant required?

Not stated

Presymptomatic carriers eligible?

Yes

At-risk relative eligible?

Yes

Genetic test provided?

No

Genetic counseling provided?

Not stated

Results returned / offered?

Not stated

Family history required?

Not stated

Study design

Randomized?

Not stated in the official study record.

Allocation

Not stated in the official study record.

Intervention model

Not stated in the official study record.

Masking

Not stated in the official study record.

Placebo

Not stated in the official study record.

Primary purpose

Not stated in the official study record.

Endpoints

Primary outcome measures

Not stated in the official study record.

Secondary outcome measures

Not stated in the official study record.

A biomarker outcome should not automatically be interpreted as a clinical outcome.

Locations

Contact

Central contact: Not stated in the official study record.