Trisomy 13 SyndromeFACE-RareNCT06938542
Palliative Care Needs of Children With Rare Diseases and Their Families
A study testing Family Centered pediatric palliative care for family caregivers of children with rare diseases. in people with Trisomy 13 Syndrome and Arthrogryposis Congenita Multiplex With Intestinal Atresia, run by Children's National Research Institute at 1 site in United States.
Trial summary
The palliative care needs of family caregivers of children with rare diseases and their children are largely unmet, including the need for support to prepare for future medical decision making. Read more about this study
- Who is it for?
- Ages 12 months to 99 yearsHealthy volunteers can take part
- Conditions the study is for
- Trisomy 13 Syndrome, Arthrogryposis Congenita Multiplex With Intestinal Atresia, Asparagine Synthetase Deficiency
- What is being tested?
- Family Centered pediatric palliative care for family caregivers of children with rare diseases.
- Type of treatment
- Lifestyle or therapy programme
- Could I receive a placebo?
- No, everyone receives an active treatment
- How many people
- 480 participants
- Where
- 1 siteUnited States
- Study dates
- 2 Oct 2025to 2 Aug 2029
- Phase
- Interventional
- Are there results?
- Not yet: the study is under way
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages 12 months to 99 years
- All sexes
- Healthy volunteers accepted
- Child, Adult, Older adult
Who may be able to join
None listed.
Who cannot join
- Family caregiver or support person is actively homicidal, suicidal, or psychotic at the time of enrollment.
Trial locations and contacts
1 site in 1 country. Contact the study team or a site near you to ask about taking part.
United States1 site
Children's National Hospital
Washington D.C., District of Columbia, 20010
About this study
The palliative care needs of family caregivers of children with rare diseases and their children are largely unmet, including the need for support to prepare for future medical decision making. This trial will test the FACE-Rare intervention to see if investigators can identify and meet those needs; and if FACE-Rare effects family caregivers' quality of life and child healthcare utilization. Finally, investigators will determine if the intersectionality of child-sex, family-race, Federal poverty level, and social connection influences family quality of life and child health care utilization longitudinally.
Read the detailed description
Pediatric patients with rare diseases experience high mortality with 30% not living to see their 5th birthday. Families are likely to be asked to make complex medical decisions for their child. Pediatric advance care planning involves preparation and skill development to help make future medical care choices. Children with rare disorders are a heterogeneous group, resulting in their exclusion from research. Available research on families of children with rare diseases lacks scientific rigor. Although desperately needed, there are few empirically validated interventions to address these issues. Investigators propose to close a gap in our knowledge of families' needs for support in a heterogeneous group of children with rare diseases; and to test an advance care planning intervention. The FAmily CEntered (FACE) pediatric advance care planning intervention is adapted to families with children who have rare diseases. Theoretically informed and developed and adapted by the principal investigator and key stakeholders, the proposed intervention will use Respecting Choices Next Steps Pediatric ACP™ for families whose child is unable to participate in health care decision-making. Our consultation with families of children with rare disorders and the National Organization for Rare Disorders (NORD) revealed that basic palliative care needs should be addressed first, prior to an advance care planning intervention. For the study to be able to meet this request, all families randomized to the intervention will first complete the Carer Support Needs Assessment Tool (CSNAT)© adapted by investigators for use in pediatrics. In the CSNAT Approach, facilitators assess caregivers' prioritized palliative care needs and develop Shared Action Plans for increasing informal social support. Thus, investigators propose an innovative 3-session FACE-Rare intervention, integrating two evidence-based approaches. Investigators will evaluate FACE-Rare using a scientifically rigorous intent-to-treat, assessor-blinded, longitudinal, prospective, three-site, randomized controlled trial design. Family/child triads (N=160) will be randomized to FACE-Rare (CSNAT Sessions 1 \& 2 plus Respecting Choices Sessions 3) or an enhanced information Treatment as Usual control group. All families will complete questionnaires at baseline and follow-up at 3-, 6- and 12 months. Investigators will evaluate the effect of FACE-Rare on family quality of life (caregiver appraisal, psychological, spiritual). Investigators will assess the palliative care needs of families at four time points. Investigators will determine the intersectionality of child-sex, family-race, and household income on family caregiver quality of life and child healthcare utilization. Investigators will explore the influence of urban vs. rural setting and religious coping on quality-of-life outcomes. Investigators will use advanced statistical methods informed by statistical advice from rare disease investigators for clinical trials in small populations.
- Conditions
- Trisomy 13 Syndrome, Arthrogryposis Congenita Multiplex With Intestinal Atresia, Asparagine Synthetase Deficiency, CHARGE Syndrome, Early Infantile Epileptic Encephalopathy, FOXG1 Syndrome
- Being tested
- Family Centered pediatric palliative care for family caregivers of children with rare diseases.
- Keywords
- pediatrics, palliative care, rare diseases, rare disorders, randomized clinical trial, advance care planning, quality of life, social connection, intervention, spirituality, anxiety, depression, caregiving
- Medical subject headings
- Trisomy 13 Syndrome, CHARGE Syndrome, Infantile Epileptic-Dyskinetic Encephalopathy, KBG syndrome, Noonan Syndrome, Hemophilia A, Short Bowel Syndrome, Cockayne Syndrome
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
Family Centered pediatric palliative care for family caregivers of children with rare diseases.Behavioural
Child with rare disease who is unable to participate in medical decision making/family caregiver/support person triads will be randomized at a 1:1 ratio to one of two study arms, either the 3 session FACE-Rare intervention or the enhanced Treatment as Usual. Assessments will be completed at baseline, 3, 6 and 12 month outcomes.
| Study group | Role | What they receive |
|---|---|---|
| FACE-Rare | Experimental | FACE-Rare (CSNAT-P Sessions 1 \& 2 plus Next Steps: Respecting Choices Sessions 3). The CSNAT-Pediatric intervention consists of two assessment visits with the facilitator, 2-8 weeks apart, comprising conversations about sources for support in a tertiary children's hospital. The adapted Next Steps: Respecting Choices pediatric Advance Care Planning conversation engages families in a process for how to make future medical decisions consistent with the families' goals and values. The Respecting Choices structured and facilitated conversation has five stages. Stage 1: Assesses the family's understanding of illness. Stage 2: Explores experiences with hospitalization. Stage 3: Explores goals of care. Stage 4: Creates an Advance Care Plan; Stage 5: Questions for providers are written down. Stage 6: Follow-up plan and referrals, as needed. Receives: Behavioral: Family Centered pediatric palliative care for family caregivers of children with rare diseases. |
| Enhanced Treatment As Usual (TAU) | Experimental | Treatment as Usual Control (TAU): To minimize the burden to families, we have chosen an enhanced (palliative care information and resources) TAU comparison condition. Receives: Behavioral: Family Centered pediatric palliative care for family caregivers of children with rare diseases. |
What is being measured
The primary outcome is the main question the study is designed to answer.
Family Appraisal of Caregiving for Palliative Care (FACQ-PC)
The FACQ-PC is a 25-item measure consists of four theoretically derived subscales: (i) caregiver strain, (ii) positive caregiving appraisals, (iii) caregiver distress, and (iv) family well-being. Scores are from 5 = strongly agree to 1 = strongly disagree. Investigators will not calculate a Total score. On the subscale scores for positive caregiving appraisals and family well-being, higher scores mean better outcomes, i.e. greater positive caregiving appraisals or family well-being. On the subscale scores for caregiver strain and caregiver distress, higher scores mean worse outcomes, i.e. greater caregiver strain or caregiver distress. The FACQ-PC subscale scores will be computed by taking the mean of the items (score range 1-5). Some items are reverse scored, depending on how the item is phrased, so that higher scores = higher amount of the subscale being measured. So the minimum value for each subscale is 1 and the maximum value for each subscale is 5.
Measured: Baseline, 3-, 6-, and 12 month post-intervention
Functional Assessment of Chronic Illness Therapy-Spirituality-12 Version 4 Expanded (FACIT-Sp-EX)
Assessed construct of spiritual well-being. Two subscales Meaning/Peace (7 items) and Faith (5 items) and Total score (12 items) were calculated. on a 5-point Likert scale from 0=not at all to 5=very much. Some items are reverse scored. See www.facit.org Meaning/Peace subscale score range from minimum value of 0 to maximum value of 32. Higher scores indicate better meaning/peace.
Faith subscale score range from 0 minimum value to maximum value of 16. Higher scores indicate better meaning/peace.
Total score range is from 0 minimum value to maximum value of 92. Higher scores indicate better spiritual well-being.
Measured: Baseline, 3-, 6-, and 12 month post-intervention
Advance Care Plan for Child with Rare Disease Located in the Electronic Health Record (EHR).
Documentation of an advance care plan for child with rare disease in the Electronic Health Record and decisional preference - to continue all treatments, to continue all treatments with exceptions noted, to provide comfort care only.
Measured: Baseline and 1 year
Child Healthcare Utilization: initiation of palliative care consultations
Using a standardized data abstraction form to count initiation of palliative care consultations during the study.
Measured: Baseline, 3-, 6-, 12-month.
Generalized Anxiety Disorder-7 (GAD-7)
Quality of life indicator with respect to emotional health-anxiety symptoms. 7 items. Higher scores indicate greater anxiety.
Measured: Baseline, 3-, 6-, 12-month
Patient Health Questionaire-9 (PHQ-9)
Quality of life indicator with respect to emotional health-depressive symptoms. 9 items. Higer scores indicate higher symptoms of depression. A yes response to question 9 (self-harm) will trigger a referral.
Measured: Baseline, 3-, 6-, 12-month
Child Healthcare Utilization: # of days in palliative care before death.
Using a standardized data abstraction form to count # of days in palliative care before death.
Measured: Baseline, 3-, 6-, 12-month
Child Healthcare Utilization: # of hospitalizations during study participation
Using a standardized data abstraction form to count # of days hospitalized during the study.
Measured: Baseline, 3-, 6-, 12-month
Child Healthcare Utilization: # of Emergency Department visits during study participation
Using a standardized data abstraction form to count # of days used Emergency Department during study.
Measured: Baseline, 3-, 6-, 12-month
Child Healthcare Utilization: # of days in the Intensive Care Unit (ICU)
Using a standardized data abstraction form to count # of days was admitted to ICU during the study.
Measured: Baseline, 3-, 6-, 12-month
Child Healthcare Utilization: # of surgeries
Using a standardized data abstraction form to count # of surgeries during the study.
Measured: Baseline, 3-, 6-, 12-month
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted22 Apr 2025
- Study start2 Oct 2025
- Primary completion2 Feb 2029 (estimated)
- Study completion2 Aug 2029 (estimated)
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Other trials for Trisomy 13 SyndromeStudies of the same condition, open and under way.
- More trials run by Children's National Research InstituteThe sponsor's other registered studies.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Interventional
- Phase
- Phase N/A
- Primary purpose
- Supportive care
- Allocation
- Randomised
- Intervention model
- Parallel groups
- Masking
- Single blind
- Who is masked
- Outcomes assessor
- Enrolment
- 480 participants (estimated)
Sponsor and investigators
- Lead sponsor
- Children's National Research Institute
- Sponsor type
- University, hospital or other
- Collaborators
- Akron Children's Hospital, Stanford University, Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
- Responsible party
- Principal investigator, Maureen Lyon, Children's National Research Institute
- Investigators
- Maureen E Lyon, PhD, Principal investigator, Children's National Research Institute
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT06938542
- Sponsor's protocol ID
- R01HD117137-01
- Other IDs
- 1R01HD117137-01
- Acronym
- FACE-Rare
- Status last verified
- Jan 2026
- First submitted
- 8 Apr 2025
- Last updated
- 28 Jan 2026
- Results posted
- No
- Data monitoring committee
- Yes
- FDA-regulated drug
- No
- FDA-regulated device
- No
Study at a glance
From the registry record, last updated by the sponsor on 28 Jan 2026. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Palliative Care Needs of Children With Rare Diseases and Their Families
- ClinicalTrials.gov ID
- NCT06938542
- Acronym / sponsor ID
- FACE-Rare / R01HD117137-01
- Conditions
- Trisomy 13 Syndrome, Arthrogryposis Congenita Multiplex With Intestinal Atresia, Asparagine Synthetase Deficiency, CHARGE Syndrome, Early Infantile Epileptic Encephalopathy, FOXG1 Syndrome
- Keywords
- pediatrics, palliative care, rare diseases, rare disorders, randomized clinical trial, advance care planning, quality of life, social connection
- Study type
- Interventional
- Recruitment status
- Enrolling by invitation
- Enrolment
- 480 participants (estimated)
- Lead sponsor
- Children's National Research InstituteUniversity, hospital or other
- Collaborators
- Akron Children's Hospital, Stanford University, Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
- Study start
- 2 Oct 2025 (actual)
- Primary completion
- 2 Feb 2029 (estimated)
- Study completion
- 2 Aug 2029 (estimated)
- First posted
- 22 Apr 2025 (actual)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
The palliative care needs of family caregivers of children with rare diseases and their children are largely unmet, including the need for support to prepare for future medical decision making. This trial will test the FACE-Rare intervention to see if investigators can identify and meet those needs; and if FACE-Rare effects family caregivers' quality of life and child healthcare utilization. Finally, investigators will determine if the intersectionality of child-sex, family-race, Federal poverty level, and social connection influences family quality of life and child health care utilization longitudinally.
Detailed description
Pediatric patients with rare diseases experience high mortality with 30% not living to see their 5th birthday. Families are likely to be asked to make complex medical decisions for their child. Pediatric advance care planning involves preparation and skill development to help make future medical care choices. Children with rare disorders are a heterogeneous group, resulting in their exclusion from research. Available research on families of children with rare diseases lacks scientific rigor. Although desperately needed, there are few empirically validated interventions to address these issues. Investigators propose to close a gap in our knowledge of families' needs for support in a heterogeneous group of children with rare diseases; and to test an advance care planning intervention. The FAmily CEntered (FACE) pediatric advance care planning intervention is adapted to families with children who have rare diseases. Theoretically informed and developed and adapted by the principal investigator and key stakeholders, the proposed intervention will use Respecting Choices Next Steps Pediatric ACP™ for families whose child is unable to participate in health care decision-making. Our consultation with families of children with rare disorders and the National Organization for Rare Disorders (NORD) revealed that basic palliative care needs should be addressed first, prior to an advance care planning intervention. For the study to be able to meet this request, all families randomized to the intervention will first complete the Carer Support Needs Assessment Tool (CSNAT)© adapted by investigators for use in pediatrics. In the CSNAT Approach, facilitators assess caregivers' prioritized palliative care needs and develop Shared Action Plans for increasing informal social support. Thus, investigators propose an innovative 3-session FACE-Rare intervention, integrating two evidence-based approaches. Investigators will evaluate FACE-Rare using a scientifically rigorous intent-to-treat, assessor-blinded, longitudinal, prospective, three-site, randomized controlled trial design. Family/child triads (N=160) will be randomized to FACE-Rare (CSNAT Sessions 1 \& 2 plus Respecting Choices Sessions 3) or an enhanced information Treatment as Usual control group. All families will complete questionnaires at baseline and follow-up at 3-, 6- and 12 months. Investigators will evaluate the effect of FACE-Rare on family quality of life (caregiver appraisal, psychological, spiritual). Investigators will assess the palliative care needs of families at four time points. Investigators will determine the intersectionality of child-sex, family-race, and household income on family caregiver quality of life and child healthcare utilization. Investigators will explore the influence of urban vs. rural setting and religious coping on quality-of-life outcomes. Investigators will use advanced statistical methods informed by statistical advice from rare disease investigators for clinical trials in small populations.
Study design
- Primary purpose
- Supportive care
- Allocation
- Randomised
- Intervention model
- Parallel groups
- Masking
- Single blind (outcomes assessor)
- Number of arms
- 2
| Arm | Type | Receives |
|---|---|---|
| FACE-Rare | Experimental | Behavioral: Family Centered pediatric palliative care for family caregivers of children with rare diseases.FACE-Rare (CSNAT-P Sessions 1 \& 2 plus Next Steps: Respecting Choices Sessions 3). The CSNAT-Pediatric intervention consists of two assessment visits with the facilitator, 2-8 weeks apart, comprising conversations about sources for support in a tertiary children's hospital. The adapted Next Steps: Respecting Choices pediatric Advance Care Planning conversation engages families in a process for how to make future medical decisions consistent with the families' goals and values. The Respecting Choices structured and facilitated conversation has five stages. Stage 1: Assesses the family's understanding of illness. Stage 2: Explores experiences with hospitalization. Stage 3: Explores goals of care. Stage 4: Creates an Advance Care Plan; Stage 5: Questions for providers are written down. Stage 6: Follow-up plan and referrals, as needed. |
| Enhanced Treatment As Usual (TAU) | Experimental | Behavioral: Family Centered pediatric palliative care for family caregivers of children with rare diseases.Treatment as Usual Control (TAU): To minimize the burden to families, we have chosen an enhanced (palliative care information and resources) TAU comparison condition. |
Who may qualify
- Ages
- 12 months to 99 years
- Sex
- All
- Healthy volunteers
- Accepted
- Age groups
- Child, Adult, Older adult
Key inclusion criteria (0 listed)
Key exclusion criteria (1 listed)
- Family caregiver or support person is actively homicidal, suicidal, or psychotic at the time of enrollment.
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Interventions
| Intervention | Type | Arms |
|---|---|---|
| Family Centered pediatric palliative care for family caregivers of children with rare diseases.Child with rare disease who is unable to participate in medical decision making/family caregiver/support person triads will be randomized at a 1:1 ratio to one of two study arms, either the 3 session FACE-Rare intervention or the enhanced Treatment as Usual. Assessments will be completed at baseline, 3, 6 and 12 month outcomes. | Behavioural | Enhanced Treatment As Usual (TAU), FACE-Rare |
Primary outcome
Family Appraisal of Caregiving for Palliative Care (FACQ-PC)
Time frame: Baseline, 3-, 6-, and 12 month post-intervention
The FACQ-PC is a 25-item measure consists of four theoretically derived subscales: (i) caregiver strain, (ii) positive caregiving appraisals, (iii) caregiver distress, and (iv) family well-being. Scores are from 5 = strongly agree to 1 = strongly disagree. Investigators will not calculate a Total score. On the subscale scores for positive caregiving appraisals and family well-being, higher scores mean better outcomes, i.e. greater positive caregiving appraisals or family well-being. On the subscale scores for caregiver strain and caregiver distress, higher scores mean worse outcomes, i.e. greater caregiver strain or caregiver distress. The FACQ-PC subscale scores will be computed by taking the mean of the items (score range 1-5). Some items are reverse scored, depending on how the item is phrased, so that higher scores = higher amount of the subscale being measured. So the minimum value for each subscale is 1 and the maximum value for each subscale is 5.
Functional Assessment of Chronic Illness Therapy-Spirituality-12 Version 4 Expanded (FACIT-Sp-EX)
Time frame: Baseline, 3-, 6-, and 12 month post-intervention
Assessed construct of spiritual well-being. Two subscales Meaning/Peace (7 items) and Faith (5 items) and Total score (12 items) were calculated. on a 5-point Likert scale from 0=not at all to 5=very much. Some items are reverse scored. See www.facit.org Meaning/Peace subscale score range from minimum value of 0 to maximum value of 32. Higher scores indicate better meaning/peace. Faith subscale score range from 0 minimum value to maximum value of 16. Higher scores indicate better meaning/peace. Total score range is from 0 minimum value to maximum value of 92. Higher scores indicate better spiritual well-being.
Advance Care Plan for Child with Rare Disease Located in the Electronic Health Record (EHR).
Time frame: Baseline and 1 year
Documentation of an advance care plan for child with rare disease in the Electronic Health Record and decisional preference - to continue all treatments, to continue all treatments with exceptions noted, to provide comfort care only.
Child Healthcare Utilization: initiation of palliative care consultations
Time frame: Baseline, 3-, 6-, 12-month.
Using a standardized data abstraction form to count initiation of palliative care consultations during the study.
Generalized Anxiety Disorder-7 (GAD-7)
Time frame: Baseline, 3-, 6-, 12-month
Quality of life indicator with respect to emotional health-anxiety symptoms. 7 items. Higher scores indicate greater anxiety.
Patient Health Questionaire-9 (PHQ-9)
Time frame: Baseline, 3-, 6-, 12-month
Quality of life indicator with respect to emotional health-depressive symptoms. 9 items. Higer scores indicate higher symptoms of depression. A yes response to question 9 (self-harm) will trigger a referral.
Child Healthcare Utilization: # of days in palliative care before death.
Time frame: Baseline, 3-, 6-, 12-month
Using a standardized data abstraction form to count # of days in palliative care before death.
Child Healthcare Utilization: # of hospitalizations during study participation
Time frame: Baseline, 3-, 6-, 12-month
Using a standardized data abstraction form to count # of days hospitalized during the study.
Child Healthcare Utilization: # of Emergency Department visits during study participation
Time frame: Baseline, 3-, 6-, 12-month
Using a standardized data abstraction form to count # of days used Emergency Department during study.
Child Healthcare Utilization: # of days in the Intensive Care Unit (ICU)
Time frame: Baseline, 3-, 6-, 12-month
Using a standardized data abstraction form to count # of days was admitted to ICU during the study.
Child Healthcare Utilization: # of surgeries
Time frame: Baseline, 3-, 6-, 12-month
Using a standardized data abstraction form to count # of surgeries during the study.
Results and safety
This study is still under way. Results are not available in the source record yet.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 28 Jan 2026.
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Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part.
Maureen E Lyon, PhD principal investigator
Children's National Research Institute
1 site in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
A study testing Family Centered pediatric palliative care for family caregivers of children with rare diseases. in people with Trisomy 13 Syndrome and Arthrogryposis Congenita Multiplex With Intestinal Atresia, run by Children's National Research Institute at 1 site in United States.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 0 inclusion and 1 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: enrolling by invitation, as of the sponsor's last update on 28 Jan 2026. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 1 site in United States. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
This study is still under way. Results are not available in the source record yet.
How can a doctor refer a patient or contact the research team?
The record lists no contact. The official record names the sponsor, who can be asked directly. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
Family Appraisal of Caregiving for Palliative Care (FACQ-PC) (time frame: Baseline, 3-, 6-, and 12 month post-intervention). The study lists 11 primary outcomes in all. It is what the study was designed to measure, not a finding.
Where can I read the original study information?
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 28 Jan 2026.