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Natural History and Biospecimen Acquisition for Children and Adults With Rare Solid Tumors

National Cancer Institute (NCI) · NCT03739827

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Opens the official ClinicalTrials.gov record, with the study team’s contacts. Bored Studies doesn’t enroll anyone.

Key facts

Compensation
Not posted. Ask the study team before screening.
Who can join
Ages 1 mo+ · All sexes
Healthy volunteers
Accepted
Study type
Observational
Target enrollment
10000
US sites recruiting
3
Study start
January 28, 2019
Record last updated
October 26, 2026

Status re-checked against ClinicalTrials.gov within the last 12 hours.

What the study is about

Background

Approximately 150 cases of cancer per one million per year are considered rare cancers. While all tumors originate from genetic changes, a small percentage of these tumors are familial. Researchers want to study these changes in biological samples from people with rare tumors in order to learn more about how these tumors develop. The information obtained from this study may lead to improved screening, preventive guidelines, and treatments.

Objective

To better understand rare cancers and hereditary cancer syndromes.

Eligibility

People who have a rare tumor, a family history of a rare tumor, a hereditary cancer syndrome, or a mutation that leads to rare tumors.

Design

Participants will be screened with questions about their medical history and/or that of their family members. They will give a saliva sample.

Participants who have a tumor will have their medical records and tests reviewed. They will answer questions about their wellbeing and needs. They may provide a tumor tissue sample.

Participants may also have

  • Physical exam
  • Clinical photography
  • Blood, urine, saliva, and stool samples taken
  • Consultation with specialists
  • A scan that produces a picture of the body. Either one that uses a small amount of radiation, or one that uses a magnetic field.
  • Genetic testing/genetic counseling.

Participants will be contacted once a year. They will answer updated questions about their medical and family history.

Participants will be asked to contact the study team if there are changes in their tumors.

Participants may be invited to join focus groups for people with the same diagnosis of rare tumors.

Participants may be invited to participate in other NIH protocols.

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RARE TUMOR LIST

  • Acinar cell carcinoma of the pancreas
  • Adamantinoma
  • Adenosqaumous carcinoma of the pancreas
  • Adrenocortical carcinoma
  • Alveolar soft part sarcoma
  • Anaplastic Thyroid Cancer
  • Angiosarcoma
  • Atypical Teratoid Rhabdoid Tumor/MRT
  • Carcinoid
  • Carcinoma of Unknown Primary
  • Chondrosarcoma
  • Chondromyxoid fibroma
  • Chordoma
  • Clear cell renal carcinoma
  • Clear Cell Sarcoma
  • Clear cell sarcoma of kidney
  • Conventional chordoma
  • Dedifferentiated chordoma
  • Desmoid
  • Desmoplastic small round cell tumor
  • Epithelioid hemangioendothelioma
  • Esthenioneuroblastoma
  • Ewing Sarcoma
  • Fibrolamellar carcinoma
  • Fusion negative rhabdomyosarcoma
  • Fusion positive renal cell carcinoma
  • Fusion positive rhabdomyosarcoma
  • Gastro-enteropancreatic neuroendocrine tumor
  • Hepatoblastoma
  • Hereditary Diffuse Gastric Cancer
  • Inflammatory myofibroblastic tumor
  • Kaposiform hemangioendothelioma
  • Malignant ectomesenchymal tumor
  • Malignant peripheral nerve sheath tumor
  • Malignant triton tumor
  • Medullary thyroid cancer
  • Mixed acinar adenocarcinoma
  • Mixed acinar neuroendocrine carcinoma
  • Myxoid Liposarcoma
  • Neuroblastoma
  • Neuroendocrine tumors
  • NUT midline carcinoma
  • Osteosarcoma
  • Pancreas ductal adenocarcinoma with squamous features
  • Pancreatic acinar cell carcinoma
  • Papillary renal cell carcinoma
  • Paraganglioma
  • Parosteal Osteosarcoma
  • Periosteal Osteosarcoma
  • Peripheral nerve sheath tumor
  • Peripheral primitive neuroectodermal tumor
  • Pheochromocytoma
  • Pituitary cancer
  • Poorly differentiated chordoma
  • Renal medullary carcinoma
  • Rhabdomyosarcoma
  • Round cell Liposarcoma
  • Schwannoma
  • Sclerosing Epithelioid Fibrosarcoma
  • SDH deficient GIST
  • SMARCB1 deficient tumors
  • SMARCA4 deficient tumors
  • Synovial sarcoma
  • Undifferentiated Sarcoma

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Conditions: Malignant Solid Tumors; Other Neoplasms Solid Tumors; Pediatric Solid Tumor; Refractory Solid Tumors; Solid Tumor

Eligibility criteria

Copied from the official record. The study team makes the final decision at screening.

Show full criteria
  • INCLUSION CRITERIA:
  • Cohort 1: Participants with a diagnosis of a rare solid tumor (fewer than 15 cases in 100,000 people per year). There are no age restrictions beyond the neonatal period (4 weeks).

OR

-Cohort 2: Participants without a rare tumor who have a germline genetic variant that predisposes to a rare solid tumor

OR

-Cohort 3: Relatives of participants with diagnosis of rare solid tumors who do NOT have a known germline variant that predisposes to a rare solid tumor

OR

  • Cohort 4: Parent/guardian of child participating in a focus group if not already enrolled on the study.
  • Ability of subject or Legally Authorized Representative (LAR) to understand and the willingness to sign a written informed consent document.

EXCLUSION CRITERIA

None

Recruiting US locations

  • National Institutes of Health Clinical Center

    Bethesda, MD 20892

    Site contact: National Cancer Institute Referral Office · 888-624-1937 · ncimo_referrals@mail.nih.gov

  • Oregon Health and Science University

    Portland, OR 97239

    Site contact: Takumi Suzuki · 503-494-3621 · suzukit@ohsu.edu

  • Texas Children's Hospital

    Houston, TX 77030

    Site contact: Gaylon Stevenson · (713) 798-495_ · gnsteve1@texaschildrens.org

Study contacts (from the official record)

  • Barbara J Thomas, R.N. · (240) 858-3633 · barbara.thomas2@nih.gov
  • Mary F Wedekind Malone, D.O. · (240) 858-3765 · maryfrances.wedekindmalone@nih.gov
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Natural History and Biospecimen Acquisition for Children and… (NCT03739827) | Bored Studies