Children Affected by Rare Disease and Their Families Network

Summary

Families of children with rare diseases (i.e., not more than 5 out of 10.000 people are affected) are often highly burdened with fears, insecurities and concerns regarding the affected child and his/her siblings. The project at hand will test two innovative forms of care (CARE-FAM and WEP-CARE) at 17 sites in 12 federal states of Germany. The goal is to improve the mental health and quality of life of children affected by rare diseases and their relatives in a sustainable manner. If successful, these interventions will be introduced into regular care.

Conditions

• Rare Diseases

Interventions

BEHAVIORAL

CARE-FAM

CARE-FAM is a family-based intervention for the diagnostic, early detection and early treatment of mental health issues of children affected by rare diseases, their siblings and their parents. CARE-FAM is a brief low-frequency intervention comprising six to eight sessions per family over a period of six months.

BEHAVIORAL

WEP-CARE

WEP-CARE is an online-intervention that addresses parents of children and adolescents affected by rare diseases. The program is based on principles of cognitive-behavioral writing therapy. Supported by trained professionals, the participants perform 12 standardized writing tasks on a secured internet platform

Sponsors & Collaborators

• Techniker Krankenkasse

  collaborator OTHER

• BARMER

  collaborator OTHER

• DAK Gesundheit

  collaborator OTHER

• KKH Kaufmännische Krankenkasse

  collaborator UNKNOWN

• BKK Mobil Oil

  collaborator INDUSTRY

• Achse e.V.

  collaborator UNKNOWN

• University of Ulm

  collaborator OTHER

• Universitätsklinikum Hamburg-Eppendorf

  collaborator OTHER

• University Hospital Schleswig-Holstein

  collaborator OTHER

• University Medical Center Rostock

  collaborator OTHER

• University Hospital Muenster

  collaborator OTHER

• University Hospital, Essen

  collaborator OTHER

• Ruhr University of Bochum

  collaborator OTHER

• Universitätsklinikum Köln

  collaborator OTHER

• University of Göttingen

  collaborator OTHER

• Hannover Medical School

  collaborator OTHER

• Evangelisches Klinikum Bethel

  collaborator UNKNOWN

• Charite University, Berlin, Germany

  collaborator OTHER

• DRK Kliniken Berlin Westend

  collaborator UNKNOWN

• Universitätsklinikum Leipzig

  collaborator OTHER

• University of Giessen

  collaborator OTHER

• University Hospital Freiburg

  collaborator OTHER

• Josefinum Augsburg

  collaborator UNKNOWN

• University Hospital Augsburg

  collaborator OTHER

• University Hospital, Saarland

  collaborator OTHER

• Jena University Hospital

  collaborator OTHER

• Leibniz Universität, Center for Health Economics Research Hannover

  collaborator UNKNOWN

• aQua-Institut

  collaborator UNKNOWN

• Silke Wiegand-Grefe, Prof. Dr.

  lead OTHER

Study Design

Allocation

RANDOMIZED

Purpose

SUPPORTIVE_CARE

Masking

SINGLE

Model

FACTORIAL

Eligibility

Min Age

1 Day

Max Age

21 Years

Sex

ALL

Healthy Volunteers

No

Timeline & Regulatory

Start

2019-01-01

Primary Completion

2022-09-30

Completion

2022-12-31

Countries

• Germany

Study Locations