Evidence map›Paper›PMID 42453175›Full record

ArticleNeuro-oncology practice2026

Natural history study of adults with primary central nervous system tumors: Initial results for first 1000 participants.

Kimberly R Robins, Hope Miller, Michelle L Cassidy, Vivian A Guedes, Ewa Grajkowska, Tricia Kunst, Anna Choi, Alvina Acquaye-Mallory, Marta Penas-Prado, Jennifer Reyes and 4 more

Abstract read
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In one paragraph

Article in Neuro-oncology practice, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

14 authors.

Kimberly R RobinsNeuro-Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda (K.R.R., H.M., M.L.C., V.A.G., E.G., T.K., A.C., A.A.-M., M.P.-P., J.R., M.R.G., T.S.A.).ORCID https://orcid.org/0009-0007-7423-9873
Hope MillerNeuro-Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda (K.R.R., H.M., M.L.C., V.A.G., E.G., T.K., A.C., A.A.-M., M.P.-P., J.R., M.R.G., T.S.A.).
Michelle L CassidyNeuro-Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda (K.R.R., H.M., M.L.C., V.A.G., E.G., T.K., A.C., A.A.-M., M.P.-P., J.R., M.R.G., T.S.A.).
Vivian A GuedesNeuro-Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda (K.R.R., H.M., M.L.C., V.A.G., E.G., T.K., A.C., A.A.-M., M.P.-P., J.R., M.R.G., T.S.A.).
Ewa GrajkowskaNeuro-Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda (K.R.R., H.M., M.L.C., V.A.G., E.G., T.K., A.C., A.A.-M., M.P.-P., J.R., M.R.G., T.S.A.).
Tricia KunstNeuro-Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda (K.R.R., H.M., M.L.C., V.A.G., E.G., T.K., A.C., A.A.-M., M.P.-P., J.R., M.R.G., T.S.A.).
Anna ChoiNeuro-Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda (K.R.R., H.M., M.L.C., V.A.G., E.G., T.K., A.C., A.A.-M., M.P.-P., J.R., M.R.G., T.S.A.).
Alvina Acquaye-MalloryNeuro-Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda (K.R.R., H.M., M.L.C., V.A.G., E.G., T.K., A.C., A.A.-M., M.P.-P., J.R., M.R.G., T.S.A.).
Marta Penas-PradoNeuro-Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda (K.R.R., H.M., M.L.C., V.A.G., E.G., T.K., A.C., A.A.-M., M.P.-P., J.R., M.R.G., T.S.A.).
Jennifer ReyesNeuro-Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda (K.R.R., H.M., M.L.C., V.A.G., E.G., T.K., A.C., A.A.-M., M.P.-P., J.R., M.R.G., T.S.A.).
Kenneth AldapeLaboratory of Pathology, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda (K.A.).ORCID https://orcid.org/0000-0001-5119-7550
Mark R GilbertNeuro-Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda (K.R.R., H.M., M.L.C., V.A.G., E.G., T.K., A.C., A.A.-M., M.P.-P., J.R., M.R.G., T.S.A.).ORCID https://orcid.org/0000-0001-8935-1744
Elizabeth VeraOffice of Patient-Centered Outcomes Research, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda (E.V.).ORCID https://orcid.org/0000-0001-5990-7705
Terri S ArmstrongNeuro-Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda (K.R.R., H.M., M.L.C., V.A.G., E.G., T.K., A.C., A.A.-M., M.P.-P., J.R., M.R.G., T.S.A.).

Funding

A Phase I Combination Study of Durvalumab and Vicinium in BCG refractory NMIBCZIABC011786 · NCI · DIVISION OF BASIC SCIENCES - NCI · PI AGARWAL, PIYUSH · 2017 to 2019
$137k
Intramural NIH HHS ZIA BC011786
6 · The paper itself

Abstract

Background: Primary central nervous system tumors (PCNST) are rare, understudied tumors for which knowledge of their clinical course, biology, physical, and psychological impact is limited. The National Cancer Institute's Neuro-Oncology Branch Natural History Study was developed to better understand the long-term disease course and outcomes experienced by these patients. Methods: Past medical histories, tumor tissue (if available), and patient-reported outcomes assessing symptom burden, general health status, anxiety, depression, and perceived cognitive deficits were collected at study enrollment. Sociodemographic, clinical, molecular, and patient-reported outcome data were analyzed descriptively. Results: Among the first 1000 participants, 796 had primary brain tumors (PBT) and 92 had primary spine tumors (PST); 88 were excluded. The cohort was predominantly male (56%), White (81%), and non-Hispanic (89%). Based on advanced molecular testing at enrollment, 190 (21%) patients had a change in diagnosis or subclassification since their initial diagnosis. Meningioma cases reported family brain tumor history more frequently than others. Most PBTs were diagnosed within 6 months of symptoms, while most PSTs were diagnosed ≥1 year after. Patients with PBT and PST reported an average of 10 symptoms, with 4 and 5 symptoms rated as moderate/severe, respectively. Nearly half of PBT participants reported anxiety or depression (46%) and difficulty with usual activities (48%). PST participants reported higher functional impairment and worse general health status. Conclusion: These findings underscore the substantial burden of PCNSTs and highlight the value of longitudinal, tumor-agnostic data in generating real-world insights into the disease trajectories of these rare and heterogeneous tumors to inform clinical research.

Indexed as

central nervous system tumorsmolecular profilingnatural historypatient-reported outcomessymptom burden

Identifiers

PMID42453175
PMCPMC13365162

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.