Children affected by rare disease (RD) and their families –network



psychosocial care, children and adolescents, rare diseases, families

Project Management

Principal investigator (PI): Prof. Dr. Silke Wiegand-Grefe, Medical Center Hamburg-Eppendorf (UKE): Department of Child and Adolescent Psychiatry and Psychotherapy

Consortium partner: University Hospital Ulm: Department of Child and Adolescent Psychiatry/Psychotherapy, providing new psychosocial types of care (TOC): WEP-CARE (A web-based psychological support program for caregivers of children with rare chronic diseases).

The project CARE-FAM-NET was conceptualized and applied for by Prof. Dr. Silke Wiegand-Grefe and Prof. Dr. Lutz Goldbeck. Since Prof. Dr. Lutz Goldbeck’s death, Prof. Dr. Jörg Fegert and Prof. Dr. Miriam Rassenhofer have assumed leadership of the subproject.

Cooperation Partners

7 health insurance cooperation partners:

  • Techniker Krankenkasse
  • Barmer-GEK
  • DAK-Gesundheit
  • KKH Kaufmännische Krankenkasse
  • AOK Baden-Württemberg
  • Mobil Betriebskrankenkasse
  • IKK classic

2 public relations partners:

  • Christine Mundlos, ACHSE e.V.

  • Dr. Jörg Dirmaier, Hamburg


2 TOC  (face to face and web-based) partners:

  • Prof. Dr. Silke Wiegand-Grefe, Hamburg (TOC face to face: CARE-FAM)
  • Prof. Dr. Jörg Fegert, Ulm (TOC web-based: WEP-CARE)

9 partners at 20 locations in 13 federal states for the implementation of the 2 TOC: child hospital (CH) with center for rare diseases (CRD) in grouping with a partner in the field of psychosocial medicine (PM) each:

  • Ulm: Prof. Dr. Jörg Fegert (Baden-Wuerttemberg)
  • Hamburg: Dr. Jonas Denecke & Prof. Dr. Silke Wiegand-Grefe (Hamburg)
  • Kiel: Prof. Dr. Ulrich Stephani (Schleswig-Holstein)
  • Bielefeld: Prof. Dr. Michael Siniatchkin (North Rhine-Westphalia (NRW))
  • Rostock: Dr. Frank Walther & Prof. Dr. Peter Kropp (Mecklenburg-Western  Pomerania)
  • Muenster: Prof. Dr. Frank Rutsch & Dr. Martina Monninger (NRW)
  • Essen: Prof. Dr. Ulrike Schara & Prof. Dr. Johannes Hebebrand (NRW)
  • Bochum: Prof. Dr. Thomas Lücke & Prof. Dr. Silvia Schneider (NRW)
  • Cologne: Prof. Dr. Jörg Dötsch & Prof. Dr. Stephan Bender (NRW)
  • Goettingen: Prof. Dr. Knut Brockmann & Prof. Dr. Eric Leibing Reich (Lower Saxony)
  • Hanover: Prof. Dr. Anibh M. Das & Prof. Dr. Karin Lange (Lower Saxony)
  • Potsdam: Prof. Dr. Michael Radke & Prof. Dr. Michael von Aster (Brandenburg)
  • Berlin-Centre: Prof. Dr. Angela Kaindl & Dr. Sibylle Winter, Charité (Berlin)
  • Berlin-West: Arpad von Moers & Prof. Dr. Michael von Aster, West Clinical Centre (Berlin)
  • Leipzig: Prof. Dr. Wieland Kieß & Prof. Dr. Anja Hilbert (Saxony)
  • Giessen: Prof. Dr. Bernd A. Neubauer & Prof. Dr. Johannes Kruse (Hesse)
  • Freiburg: Prof. Dr. Ute Spiekerkötter & Prof. Dr. Christian Fleischhaker (Baden-Wuerttemberg)
  • Augsburg: Prof. Dr. Dr. Michael Frühwald & Prof. Dr. Michele Noterdaeme (Bavaria)
  • Homburg: Prof. Dr. Michael Zemlin & Prof. Dr. Alexander von Gontard (Saarland)
  • Jena: Prof. Dr. Ulrich Brandl & Dr. Andrea Dieckmann (Thuringia)

4 partners of clinical trial evaluation:

  • Prof. Dr. Matthias Graf von der Schulenburg, Hannover (health economics)
  • Prof. Dr. Karl Wegscheider, Hamburg (medical biometry)
  • Dr. Gerald Willms, Goettingen (AQUA institute, quality management)
  • Prof. Dr. Monika Bullinger, Hamburg (access paths)

Project duration

1st October 2018 to 30th September 2021

Background and aims of the project

According to estimates, there are about two million children and adolescents in Germany living with a RD. Often, disease management requires a high degree of support and care by parents and siblings. This leads to high demands on the family which is often severely burdened by anxiety, insecurities and worries regarding the diseased child. According to studies, between 30% and 40% of mothers show clinically relevant levels of anxiety and depression.

The main goals of CARE-FAM-NET are the implementation, accompanying evaluation and transfer of two psychosocial TOC  (CARE-FAM-NET and WEP-CARE) for children with RD, their siblings and their parents in 20 locations. The existing conventional care structures are being used, connected to CARE-FAM-NET and expanded by the TOC. In case of a proven medical and health economic effectiveness, the TOC are going to be implemented into regular care.

Project description

The CARE-FAM-NET project was categorized into 2 overlapping subprojects:

Subproject 1: Implementation of a systematic screening for the early detection of psychosocial support needs of affected families, and implementation of both TOC (CARE-FAM, WEP-CARE) at 20 locations. We plan on including N=1000 families, each with at least one child between 0-21 years with a RD, in the study.  

Subproject 2: Accompanying evaluation including a cost-benefit-analysis, external quality management and optimization of access paths.

Both TOC are being evaluated together with regards to health economical and medical criteria in a multicenter randomized controlled trial with a two-factor 4-group design (CARE-FAM, WEP-CARE, both interventions, treatment as usual (TAU)). Primary outcome is children, sibling and parents mental health across 4 measurement time points (every six months).

Publications and Materials

Fidika, A., Herle, M., Lehmann, C., Weiss, C., Knaevelsrud, C., & Goldbeck, L. (2015). A web-based psychological support program for caregivers of children with cystic fibrosis: a pilot study. Health and Quality of Life Outcomes, 13(1), 11. (

Tutus, D., Plener, P. L., Niemitz, M. (2018). Qualitätskriterien internetbasierter kognitiv-behavioraler Interventionen für Kinder und Jugendliche sowie deren Eltern – Ein systematisches Review. Zeitschrift für Kinder- und Jugendpsychiatrie und Psychotherapie, 1–17. (

Tutus, D., Plener, P. L., Niemitz, M. (2018). Ulmer Onlineklinik – eine Plattform für internetbasierte Psychodiagnostik und psychologische Online-Interventionsprogramme. PiD - Psychotherapie im Dialog, 19. (

Contact Address

Funded by:

Innovation Committee at the Federal Joint Committee (GB-A)